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Joined: 10/20/2014
Posts: 7
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My wife was diagnosed with YOAD mid October. Still trying to take it all in and making plans for a rough road ahead. She immediately had to stop working and driving, and doc was concerned about possible rate of decline, so put her on memory loss medicine right away. It seems to be helping...at least I haven't noticed a significant decline in the 3 months now since diagnosis.
Several friends suggested I join a support group...so here I am. I've heard normally life expectancy of those with AD is 2-20 yrs, and those with YO is about half that. Now I'm scared. Does anybody know if that's true?
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Joined: 8/9/2013
Posts: 584
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I know its a lot to take in and it is pretty common to be scared. From what I've read, women have a longer life expectancy than men. I was diagnosed in late 2009 and I'm still doing okay. So that has been 5 years. I'm on the highest dose of all medications now. Like so many others on this board, I practice the Best Practices (exercise, mental activity, socialization, take my meds daily, and Mediterranean diet). This has really helped me plus I try to reduce stress and stay positive about my condition. Sure I'm not the same man I was before EOAD, but I still enjoy life and do many things. Hopefully your wife can join us on the boards because it is a source of encouragement for those with EOAD. God Bless, Paul
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Joined: 10/20/2014
Posts: 7
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Paul, thank you for the words of encouragement and the tips. Unfortunately, my wife can't use a computer anymore but I read the posts to her. We have been focusing on keeping her active, particularly on exercise and socialization. We are now having regular "walk & talk" sessions which are definitely helping.
She has always been a very social person, so the loss of her independence has been tough. Next task: Work to keep her positive by having friends & family check in on her regularly.
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Joined: 3/7/2012
Posts: 2790
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Welcome to the boards poppab. Let me say you are doing the correct thing by seeking information. Information is a tool that I've found to help me through this journey. My DH was diagnosed at 54 yrs old and this is year 3 for us. He too stopped working & driving and was put on the medications.
I also immediately called our local ALZ Chapter and sought out information. We've been in an ALZ group that meets 2 x's a month. It is informative and helpful. We separate into care givers & patient rooms and have different agenda's for each group. This has been wonderful for us. Last year we started with another ALZ group that meets each Friday. I can't say enough about this group. Each Friday has a different 'theme.' Its very loose / relaxed setting. I will say yesterdays theme was music and as I looked around the room I didn't see anything but smiles - that to me is worth the world. What also has happened is the people in these groups have become family. They get it, understand it, know what its like, etc. After our Friday group we go to lunch. Some days there are 8 of us like yesterday. The week before we had 15. It is most social involvement for our LO but equally for us care givers also. I would highly encourage you to see what's available to you both.
My DH has several activities he enjoys doing so he keeps busy. We don't turn the TV on until the evening. I find the calmer I keep the house the better DH is. Always have soft music on, but if I see he's no having a good day I put on music that I know he relates to. This entire thing is a journey - and you take a journey by going day by day.
Please ask questions, etc. Exercise is important also, as is diet. However, you need not get overwhelmed as your wife will. Small changes to daily routine until you find what works best for the both of us.
Hope this helps some.
eagle
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Joined: 12/11/2014
Posts: 34
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I was told the same thing about my husband, regarding it progressing faster. He is 51 ( I am 42) and has been showing symptoms for about 3 1/2-4 yrs now. He was diagnosed about 1 1/2 years ago after seeing 3 Neurologists. I even took him to an Endocrinologist to rule out a metabolic cause. He is physically healthy. He is on Namenda and Donepezil and it does slow down the progression. He has gotten worse in the last year. He can still take care of himself but is no longer allowed to drive and needs help making decisions. He will ask me the same questions a number of times in a day. He can still fix things around the house or yard. He can't use a computer and can do the basics on his iphone.We do have a small child and I work full time so its very challenging for everyone. I understand how scary and difficult it is. My husband doesn't always accept he has this. He knows he does, but other times he seems to forget what he is taking the medication for and if I mention it its like he is hearing the diagnosis for the first time. We just try to go about our lives as normal as possible. I know it'll be harder later but for right now its not so bad. Do expect your wife to get to a point where she is more emotional. My husband gets angry at times about very trivial things or gets really sad when he is too confused. It comes with the disease. Its best to take care of your estate planning/power of attorney now while she can still make decisions. Also, you may file for disability under "early onset alzheimers". It falls under the compassionate illnes so it'll get approved fast. Hope this helps! At least you know you and your family are not alone. It seems to be becoming more common. Before my husband was diagnosed I never even heard of Early Onset Alzheimers.
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Joined: 1/15/2015
Posts: 7
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poppab wrote:"My wife was diagnosed with YOAD mid October. Still trying to take it all in and making plans for a rough road ahead. She immediately had to stop working and driving, and doc was concerned about possible rate of decline, so put her on memory loss medicine right away. It seems to be helping...at least I haven't noticed a significant decline in the 3 months now since diagnosis.
Several friends suggested I join a support group...so here I am. I've heard normally life expectancy of those with AD is 2-20 yrs, and those with YO is about half that. Now I'm scared. Does anybody know if that's true?"
poppab, I was diagnosed at age 48 in 2007. I am still doing well and pretty much independent even though I do have a spouse. My belief is that the so called averages are outdated and should be completely ignored because there is no predictor. Some types and people have much faster progression, that is true, but even within those types there are big differences in life expectancy. None of us has a guarantee that we will wake up tomorrow, meaning including healthy people, or not be in an accident that takes our life. So, to me the most important lesson is that live for each day, concentrate on what you can still do, not on what you have lost. Use what are known to be best practices for exercise, diet, and keeping your brain active. I personally believe that if you can find a new passion, a reason for your existence that it does wonders in both keeping your mind active and keeping your mood positive. It is just one of the driving forces behind starting Dementia Alliance International. We intend to have all sorts of things for people with dementia to become involved in (if they are interested) and give them a platform to make meaningful contributions to society. Just because we have this disease does not mean we should sit and watch TV all day or some of the other prescribed disengagement that is common practice. I think that is one of the ways to accelerate the disease process because it is like giving up. Now we need to enjoy ourselves so you have to find things that are meaningful to you and spark you to action. For me that has been advocacy and trying to help others that are diagnosed to see it isn't the end, it is a wake up call to really live the remainder of your life. Most everything hinges on perception and we need to drastically change some of the perceptions with dementia. So many people think that once you have a diagnosis that you are completely incapable of being trusted with meaningful tasks or meaningful exchange of thought that it just amazes many of us on a constant basis. Richard Taylor, a good friend, actually was hired as a professor of abnormal psychology after his diagnosis because he knew he shouldn't be in private practice at that point but didn't feel like he was ready to give up all work within his profession. He found unique ways to adapt and that is what I recommend to everyone, find ways to adapt so that you can keep being as independent as possible, it helps with the brain and self esteem. So, I have gone way off topic but that is normal for me, part of my disease. When I was first diagnosed my wife and I looked at "averages" or life expectancies on the internet as well. According to what we read, I should have already been dead let alone still be functioning fairly well.
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Joined: 11/29/2011
Posts: 7027
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Welcome to our world.
Some states have a phone support group, usually directed by the states director of Early Stage activities. Do call your local Alz. Chapter. And some lucky folks even have wonderful groups for those in Early Stage. Do check.
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Joined: 10/20/2014
Posts: 7
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Thanks Mimi. My wife has been resistant to joining a support group. I brought it up again tonight, and she seems to be more receptive this time. Honestly, it is all pretty overwhelming. Working full time and preparing to move so I can take better care of her, I don't know how I am going to fit it all in. It is on my to do list though.
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Joined: 10/20/2014
Posts: 7
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Thanks for your perspective jball. I seem to be riding an emotional roller coaster lately. I think I should probably pay less attention to the "averages" I'm being told, and more attention on trying to figure out what our "new normal" is and finding a way to make it work.
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Joined: 10/20/2014
Posts: 7
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Thanks Amy. Yes that does help. My wife has now had Namenda added to the Donepezil. I was afraid that was because her ALZ was getting significantly worse and I am missing the signs, but the nurse called me back and said that combination was shown to have the best results.
We are in the process of filing for disability and have an appt at end of next month. Hopeful, but apprehensive. We did get her legal documents in place so that is some relief.
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Joined: 10/20/2014
Posts: 7
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Thanks eagle. It does help. I am going to find some kind of daily routine for my wife. It has become clear that we will have to move (downsize & closer to my work) so I can take better care of her, run home at lunch if I need to, etc. Most days I am exhausted. I will start looking for a local support group that we can go to in person.
Fortunately, we have had a number of people offer to help. I found a great website "Lotsa Helping Hands" that we are using to post ALZ related announcements and ask for specific help in the near future. So far it seems to be working well.
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Joined: 6/5/2014
Posts: 1591
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welcome, pappab... You have come to the right place. Read and ask away, anything and everything comes up here if you search the archives. I'd also try to get into a local, face-to-face support group. Like the local chapter of Alz. Assn., they can be of better help with particulars in your area, such as caregivers, programs, and other support. How old is your wife? There are many here in their 50's and younger. One of the sad things about EOD is that our government still views dementia as being only an issue for seniors. They need to adapt to the current trend, but I suppose bureaucratic wheels turn slowly. You should check with your Office of Aging (or whatever it's called in your state) and inquire about programs such as daycare. I know in my state it's only for those 60 or older. Hopefully that will soon change.
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Joined: 12/15/2011
Posts: 18704
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Rhonda, we patients on this board are not in such a depressive mode. We are hopeful, because we take control of our lives. We are assertive about our treatment. Part of our treatment is to maintain a positive attitude. Negative and depressive attitudes are harmful to us.
It is important to avail ourselves of various treatment modalities to see what will help. Most of us are on memory medications and have found good results. The earlier the medications are begun, the better for most patients.
It is vital for the patient to be in a supportive environment. We patients support each other. Please invite your husband to join us patients on the patient board so that we can meet and support him.
Iris L.
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Joined: 11/29/2011
Posts: 7027
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My two cents: I've been on this board for a number of years and associated with the Alzheimer's Association for a bit longer.
It seems that two things are important in how we do and how long our decline lasts.
1. The earlier we are diagnosed, the better our future can be.
2. The more proactive the patient is in their own care, the better the prognosis.
The caregiver may have the best knowledge and intentions, but if the person could care less, the future does not bode well.
"You can lead a horse to water, but you can't make him drink it."
But, one can try. Bob De Marco on the Alzheimer's Daily worked wonders with his, at first, very negative mom. He changed his attitude.
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Joined: 12/15/2011
Posts: 18704
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Rhonda, I am sorry you misinterpreted my post. I want every patient to receive the positive support that is available to him or her on this board. For most patients, this board is the only area they can receive hope and encouragement.
Most people in the public have a negative view of Alzheimer's disease and Alzheimer's patients. The negativity and sense of hopelessness can be overwhelming to patients. There IS hope.
But we patients in the early stages must become active and assertive in our own care. The only way this can be accomplished is for patients to learn from other patients who are going through the same things. This is what we patients do for each other on this board. We learn about Best Practices and medications and what to do for ourselves.
The medications don't help everyone. But a patient in stage 3 or 4 has the best bet of becoming stabilized and even making improvement when treatment is begun early. Waiting several months for treatment is like making a cancer patient wait for chemotherapy, IMO. There has to be a good reason. There may be a good reason to delay chemotherapy. There might be a good reason to delay the memory medications in a person already diagnosed as EOAD, but the patient should know the reason why.
I deleted my quotation of your post as you requested.
Iris L.
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Joined: 12/15/2011
Posts: 18704
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Many care partners come to these boards with stories that their LOs was recently diagnosed as having Alzheimer's disease, but had been symptomatic for several years. It hurts my heart to learn of so many patients being denied treatment early, when it could work.
Dementia cannot be cured at this time, but it can be managed. Patients can still have a good quality of life. It would be best if patient and care partner could work together to handle the changes due to dementia entering their lives. But, sadly, that may not be possible. Many patients will have to undertake their journey alone.
Personally, I feel better knowing that I can make my own decisions for getting care, and that I am being pro-active. I have a neurologist who started me on treatment early. Everyone else discouraged me. One gcm told me patients have 7 years to live if I had AD. That was 7 years ago! Phooey on her!
I don't know where I would be without treatment. I know I would not be living independently in my own home and posting on these boards.
These two patient boards are the only place for patients to receive encouragement. Patients, THERE IS HOPE!
Iris L.
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Joined: 5/20/2014
Posts: 4408
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I needed that. Thank you Mimi & Iris!
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Joined: 2/5/2015
Posts: 4
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Hello Everyone!
My name is CJ and I am 35 years old. My mother (who is currently 60 years old) was
diagnosed with an undiagnosed form of early on-set dementia in Aug of 2014. My
mother lives with me & I am her primary caregiver. I joined the forum today
in order to give & receive support, and to learn as much as possible in
order to give her the best possible life I can give her.
I plan on calling the local chapter to find out more about support
groups, but I am also wondering if anyone in my area (Sherman Oaks, CA) would
like to become "friends" with my mother & I. J
Since her diagnosis, I relocated my mother to CA to live with me
(from AZ) and she is desperately lonely. I know she is eating properly and I am
trying to get her to exercise, but I am mostly concerned about her emotional
state. She seems extremely depressed about her condition and she doesn't have
any friends here outside of me. She was approved for disability & is not
working so she is at home all day by herself and has no one to talk to.
Unfortunately family members have not been very supportive and rarely call her
 .
I feel as though her happiness is all dependent upon me and this is
taking me away from my own life. I rush home each day and neglect my own life
in order to make her meals & provide her with company. Don’t misunderstand me, I love her dearly and
love that I am able to spend time with her, but I know she misses having other
people to do stuff with/confide in….etc.
I've tried taking her "out and about" to meet new
people, but it's hard for her to make new friends. As you can imagine, she'll keep repeating
herself or cannot find the rights words to use ....etc).
So... I am hoping that by joining the forum, my mother and I can
meet new friends and in turn she can have a companion of sorts to do stuff
with. I've also thought about adult day care, but I don't think we can afford
it and I don't think she would go. She looks pretty young for 60 & I don’t
honestly think I could even get her through the door of a place labeled “Adult
day care” .. they should have a better name, right?!?!
Blessings to everyone!
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Joined: 12/15/2011
Posts: 18704
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CJ, I responded on your other thread.
Iris L.
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Joined: 8/9/2013
Posts: 584
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CJ, you might look around and see if there is a Memory Café in your area. The Alz Association may even have a listing of those close by. Memory Cafes meet once or twice a month and are made up of folks in the early to mid stages of dementia and the care givers. It is a non-threatening environment where folks get to talk, share, eat, and have fun together. It is not adult day care. If you find one, you and your mom will make new friends, get encouragement, and enjoy a short time out with others who are in the same boat. I hope your mom will join us here on the boards. God bless, Paul
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Joined: 2/15/2015
Posts: 5
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I'm new to this forum. My sister was diagnosed with road in January. We are both very upset about it which I'm sure you can imagine. She is 59 and actually it wasn't really a surprise to us because we saw some symptoms some time ago. Our mom also had at in her early 60's and we were her caregivers. I am so sad about this as is my sister. It has been difficult for us to deal with because we have done it before and let me say it was the hardest time of our lives and now knowing what we already know is not comforting. We both know what we are in for. She has a hard time controlling her emotions .. She gets very angry very quickly these days. And I must admit it is trying and I don't always do a good job of having patience. In the last year she lost her job due to downsizing and I do believe this exacerbated the situation. I have taking over all of the responsibilities of paying all the bills..handling all of her business etc.c. it's been hard and stressful and I have recover been someone who stresses but I am now lol. She does not want anyone to know about this at this point and I do understand that because I remember how my mom was treated after people knew..even her own sisters and brother "couldn't handle it"...yeah try living with it. I want her to have the best quality of life as possible for as l9ng as possible. Its only been a couple weeks since her diagnosis..we have been trying to absorbs it. Now comes the mri the doctors want her to have and she will need to start meds but she wanted to talk to her primary doctor first. I apologize for the long post but I have had no one to talk to about this and it helps to just get it out. I don't know if these posts are timestamps but it's about 4 am here and usual for me to be not sleeping again. Anyway thanks for listening ☺
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Joined: 11/29/2011
Posts: 7027
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Dear Carynm, Please, those of you who are caregivers, urge your loved one, if possible, to write here. We don't care if there are misspellings. This site and the "I have Alzheimer's" sites are designed to be used by those of us with the disease. Others are welcome to post, but this space is for us.
For those who haven't as yet disclosed, when you sign up, don't list where you lve ad give yourself an avatar that none will associate with you. Then you can freely tell us what you are feeling.
For the newly diagnosed, take a deep breath. Yes, you have received a death sentence, as I have. But, not today, not tomorrow and probably, not for a long, long time.
A very helpful book for a first read is: Living Your Best with Early Stage Alzheimer's by Lisa Snyder of the Shiley-Marcos Alzheimer's Disease Research Center at the U. of CA at San Diego. And if you can discuss what you are reading with someone, that would be truly helpful.
Check out what your local library has. Alz.org has all sorts of links. I have found a good read is Maria Shriver's, A Woman's Nation Takes on Alzheimer's.
In my opinion, immediately making Best Practices part of your life will extend your stay in Early Stage.
1. Take meds as directed. I also take antioxidants and Omega 3. No smoking!
2. Mediterranean Diet. A glass of preferably red wine a day is fine, if tolerated. Otherwise go slow on alcohol.
3. Strenuous physical activity. Work towards getting that heart beating faster than normal for a period. Strenuous physical activity has been shown to build new brain cells!!
4. Strenuous cognitive activity. Varied is best. You want to challenge your mind. Don't pick something that frustrates you. However, for example, if you do crossword puzzles and you can fill it in with ink in a few minutes, you need something a bit harder.
5. Social contacts are important. Although most of us do poorly in large,noisy groups.
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Joined: 12/15/2011
Posts: 18704
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carynm wrote:
let me say it was the hardest time of our lives and now knowing what we already know is not comforting. We both know what we are in for.
She has a hard time controlling her emotions .. She gets very angry very quickly these days.
And I must admit it is trying and I don't always do a good job of having patience. In the last year she lost her job due to downsizing and I do believe this exacerbated the situation.
I have taking over all of the responsibilities of paying all the bills..handling all of her business etc.c. it's been hard and stressful and I have recover been someone who stresses but I am now lol.
She does not want anyone to know about this at this point and I do understand that because I remember how my mom was treated after people knew..even her own sisters and brother "couldn't handle it"...
yeah try living with it.
I want her to have the best quality of life as possible for as l9ng as possible.
Its only been a couple weeks since her diagnosis..we have been trying to absorbs it. Now comes the mri the doctors want her to have and she will need to start meds but she wanted to talk to her primary doctor first.
I apologize for the long post but I have had no one to talk to about this and it helps to just get it out. I don't know if these posts are timestamps but it's about 4 am here and usual for me to be not sleeping again. Anyway thanks for listening ☺
Welcome carynm. You have come to the right place for support and to learn what to do.
First of all, I realized that you have already posted here, but I would to suggest to all new members that you begin your own thread to introduce yourselves, instead of posting on an older thread. This way it will be less confusing for those who respond, and you will get information and advice specific for your own situation.
Never mind the long post. This is a complicated disease, and there is much to discuss. There will be a lot to absore. You will be posting more, a lot more, in the future.
As Mimi says, this board is set up primarily for us patients to communicate with each other for information and support. We welcome your sister to join us.
The biggest thing at first is to handle the diagnosis. When I was told by one doctor that I had dementia, I fell into a year long deep depression. What got me out of the depression was my desire to FIGHT with everything I have. I told myself, I am not going down without a FIGHT!
It is understandable that your sister is depressed. This is because of the huge negativity that surrounds a dx of dementia. All I could think of, was that I am going to die soon. Perhaps your sister is thinking the same. But that is not so. Dementia is usually a slowly progressing process. There is MUCH that can be done to slow the progress, and to make our lives much better.
The difficulty is in dealing with the negativity that surrounds us. And there is a great deal of negativity that surrounds us patients, coming from the family members around us, our close friends, our medical and other professionals, and the general public. The only place where there is NOT negativity, is on the pages of this patient board.
This is why it is VITAL for patients to join us and receive encouragement. Dementia diagnosed early can be treated early. There is no cure, but there is no cure for most chronic diseases. There is no cure for diabetes. My own husbnd just passed away from complications of diabetes.
I just mentioned on another thread that we are dementia pioneers. We are the first generation of patients who are aggressively pursuing Best Practices to improve our functioning and our lives. We are living fairly good lives. Not like before, but good, considering. We must make ACCOMMODATIONS. This is what we talk about on this board.
Not enough patients know about Best Practices. Please, get your sister to join us. If she does not feel up to joining right away, she can read our patient board. I lurked on the board for 3 months before I joined. During that time I read just about every thread. Of course, the boards were smaller then.
It may be hard for others, but yes, we are actually LIVING with dementia! Do not let your sister read the caregiver boards, because many of them are very negative and discouraging. They are dealing with LOs (loved ones) who are more advanced and did not have the benefit of early diagnosis and early treatment and Best Practices. Not every patient goes through each symptom. Many patients have a gentle journey.
Your sister was diagnosed as having EOAD, correct? But she has not had an MRI yet. Suppose her condition is due to a old silent stroke or mini-strokes or normal pressure hydrocephalus or brain tumor? It is most important to get all the evaluation completed before coming to a conclusion. This is because the diagnosis of the dementias is a rule-out diagnosis, after other diseases have been ruled out.
Is she consulting a neurologist who regularly diagnoses and treats the dementias? This is best, because they will know how to interpret the tests. Has she had blood tests to test for nutritional and hormonal disorders, such as vitamin B-12 deficiency or thyroid deficiency, or other medical disorders?
Have all of her medications, both prescription and non prescription, been evaluated for memory loss side effects? Many medications cause memory loss as a side effect. Have substances, such as alcohol and recreational drug use, been excluded?
Has she had a history of depression or other psychiatric disorder and treated with psychogenics? Some of them can cause memory loss as side effects.
Has she had the 6 hour neurocognitive test performed by a neuropsychologist? This is most important to determine her brain functioning.
As far as consulting with the PCP, many of them are unfamiliar with the medications used for the dementias. My own PCP refused to deal with my prescription refills.
Also, PCPs are more familiar with the later stages of the dementias. They can be very discouraging for an early stage patient.
I must mention, since your own mom had dementia at an early age, was there a discussion of genetic Familial Alzheimer's Disease? If so, your sister should have genetic testing. This is most important. There are threads on genetic testing on this board. I suggest you read many of the threads here for background.
Also read the book Mim mentioned, and also the The Alzheimer's Action Plan by Doriaswamy and Gwyther of Duke University.
Regarding your response, it is very important not to overwhelm the patient. We need peace and quiet and relief from stress and burdens. We need consistency and stability. We need a daily routine to follow. We do not need harassment from our family and friends.
If our family is agreeable, we need to plan for the future. But that can wait until you have a definite diagnosis.
If she does have EOAD, she can apply for disability insurance pension. The Alzheimer's Association has worked with the SSA for Compassionate Allowance for EOAD.
In the meantime, be aware of safety issues. If there are safety issues now, they should be addressed.
I hope I have addressed what you posted. If not, please post again.
Again, we welcome your sister to join us. There is much that can be done. First she needs a definite diagnosis. Once she does, and if it truly is Alzheimer's disease, there is HOPE.
Iris L.
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Joined: 12/14/2011
Posts: 1751
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Wow, Iris, What a kind and compassionate reply. I do believe you have covered all the bases.
Remember, we're all in the same boat (more or less); and the darn thing leaks!
Bob 
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