Soco, I am sorry to hear of your diagnosis. Anyone would be anxious with the same. Keep active, eat well, read, exercise, socialize all of which have been shown to slow progression. And make sure your legal documents are in place.
There's a great book for you to read now while you can process it all: Being Mortal by Atul Gwande. He's really laid out all the options for end of life care and nursing homes. You need to understand the parts about end of life care to make your choices for an Advanced Directive. Once you've made your choices, give the book to your family to read so they understand where you are coming from.
Mthr investigated and made great choices, but if she'd only given us her AD we would have known she did not want to fight cancer at all. Give your loved ones a copy and let them moan - it's part of their grief for you. Accept their protestations as demonstrations of love, and stand firm in your decisions. Love deeply.
Hi Socoguy, this diagnosis must have come as a shock to you. Many commiserations. However, the great news is that progress is advancing by leaps and bounds in the development and rolling out of new therapies, drugs and care procedures, so the world may be very different in about 6-8 years from now: the disease could be halted or even reversed. We just don't know. Meanwhile, with the right preparation, including the formation of new habits that will prove their worth later, you should be able to manage pretty well on your own without great anxiety for at least 6-7 years, probably longer, though of course everybody's brain is different, so there are no set stages for things to happen.
You do not tell us if you are living on your own or if you are surrounded by family. You do need to tell family and close friends about your diagnosis and you do need to make it clear to them that "you are still you" right now, and that you intend to organise your future in order to avoid future stress on yourself and on other people.
I myself am a proxy for a dear friend, 12 years older than I, who is an expatriate and has no close family still living, just a few distant cousins. Worse, at the start of her illness, she concealed it from everybody (including me) for 2 years and managed to cut herself off from all her old friends bar one former boyfriend and myself, so all the burden of care, rather unfairly, fell on me. But there was nobody else until a notary was booked to take care of the financial side. I think this was selfish of my friend, because, as the saying goes, "a problem shared is a problem halved." And having more friends around, who had already guessed at her condition, would have made my life easier and her solo life in her apartment a lot less lonely, until she went finally (not before time) into 24/7 nursing care.
So: 1) Do read all the advice in the comments in this thread; it is well-meant and comes from the heart; you may not agree with all of it, but the writers do empathise with you and want what's best for you. Take detailed notes for later.
2) If you do not do this already, make a habit of writing everything down that you do in the day, or still need to do that day, in a small notebook that you carry round everywhere with you. Always put a date on the page, and start off with a time when each task is done (cross done tasks out with one line, so you can still see what it was.) Don't input into a phone but write the words with pen or pencil. When you note down phone calls (you called out or people contacted you) NOTE DOWN WHAT WAS SAID OR AGREED. Learn how to make short notes full of meaning to you; do bullet points etc. ***REASON ***** this pernickity habit will turn into your short term memory about 4 -6 years down the line; so if you do it now automatically, without thinking, it will be in your DNA half a decade from now and you will have a better "memory" that you will be able to rely on.
2) Take your Aricept (or other drug that delays the progress of the disease) religiously every day, but try to cut out other meds as far as possible, by eating good food and taking exercise. If you already have another chronic condition, OK, take those meds too, but ask your doctor to keep the number of pills to a minimum, and to watch out for those that cancel each other out. Already start putting your pills into a weekly box dispenser that shows the days of the week, with slots for morning and evening. *****REASON**** essential to know that you have taken the pills you need; cuts out anxiety. Also, years from now, your visiting health carers will be filling the pill box for you and can rely on your ingrained habit of taking the right pill at the right time. But you can take control by doing this now.
3) Plan ahead for your end of life; make a simple will now with a youngish notary and get it signed; he keeps a copy, you keep a copy, and a family member is informed where the copy is. Essential that your will cover your financial affairs including stating how you want your money spent at the moment you need to go into residential care - and if you are a property owner, at what point this property should be sold either to finance your residential care or to be inherited after your demise. Also state your wishes about your funeral (don't specify anything expensive unless you have set up a savings plan to cover the cost). Make a separate list of prized possessions that you want to gift to certain people. *****REASON*** Do this now while you are still "of sound mind". If you change your mind inside a few years, you can always go back to the notary and update your will. If you hesitate too long, the whole ghastly business of proxies, family members interpreting your wishes etc will kick in, and your final living years and your passing could be fraught with problems and loud quarrels. So cut it out by stating your wishes early on, and specify the notary, not a family member, as the executor of your will.
4) Live your life as serenely as possible, and maintain an interest in the outside world and in other people's affairs. If you concentrate too much on your own situation, you risk becoming narcissistic and cantankerous later on when your autonomy goes. That's when the swearing and spitting and hostility can really turn off those who want to, or are paid to, help you. You can avoid that stage by deciding to accept help with good grace and by refusing to be stressed out by anything that happens to you If you do draw up a "Do Not Resuscitate" living will, make sure that your family doctor and your notary and all close family members get a copy. There is a lot of literature about dignified dying. If your family already knows that 10-15 years from now you would rather be in a hospice and slip away quietly rather than in a hospital in an intensive care unit, get their agreement to this in writing, however informally, and give this to your doctor, as living wills are not legally enforceable. ***REASON*** nothing is worse than sitting or lying in a room with two or more people shouting at each other over your head about what should be done with you. If you already planned what should be done, someone else who is in the picture can stop them from quarelling.
5) Final word: you ask if you should feel anxiety. Probably you will be anxious, at moments in the far future, when you catch yourself forgetting how things work or where you are or what you are supposed to be doing. Doctors usually prescribe mild tranquillisers ("happy pills") to help Alzheimer's patients over this stage until they accept the new restrictions on their lives. ****REASON *** Alzheimer's will only blight your life if you allow it to. Right now, you want to do everything yourself but train yourself to accept with grace when, at some time in the future, some things will need to be done for you by other people. Smile and say thankyou when this happens, and you will find that people will be happy to go on helping you. Resistance and rebellion only lead towards the horrible (and avoidable) curse of narcissism.
******HOT TIP******Now is the time to go sightseeing, visiting friends, fulfilling your bucket list or wish list, and taking lots of photos as souvenirs that can be framed and put up in a large frame on a wall later. Pictures of you enjoying yourself are a good cheerer-upper a long long way down the line. Make sure you have good photos of family members too. Read those books, watch those films, walk those trails while you can, maybe invite a friend or take or borrow a dog to do your walking with, and live in the moment. Try to share these moments. If you can live in the moment, you will experience moments of being truly happy.
Sorry for the length of this post, but I wanted to get it all down in one go. Over ten years I learned a lot about looking after a person with true Alzheimer's (all there vs nothing there inside 10 seconds interval) who luckily was prescribed Aricept by a doctor who made a correct early diagnosis but did not "let on" for two years. However, the happiest lady in the specialised residential care home is not my introverted friend but a new resident. She spends her whole time going round the residents, talking to them, looking after them and making them smile. I even thought she was a social assistant until I saw her name and photo on one of the doors. She is really happy, the nursing staff adore her, and she takes no tranquillisers at all.
So there is your answer: plan for the future but live in the moment and try to be interested in other people all the time. Let's hope that everything turns out for the best for you. Live well. Live long. Live happy.
Hi Soco, welcome to the forum. And congrats on reaching out through this forum. One thought I had is that you might read up on this disease and reduce any possible anxiety by making preparations. For example, are your legal documents in order? Will, health care proxy, Power of attorney? Are you married or designated a key person to help you along the way? Have you shared your wishes with that person? There are many other steps but let us know if you have this much done.
Early Onset doesn't mean tomorrow. My father was diagnosed with Early Onset at the age of 82 and when he passed at 88, he was still only Early Onset. There are medications to keep it from progressing and you need to start them yesterday. All dementia is affected by diet - malnutrition was linked to all dementia back in the 70's - you just never hear about that anymore. The best thing you can do is to try to limit processed foods and get some exercise - walking helps everything and you can even do it in-home.
Have you been officially diagnosed with Alzheimer’s? If not, sign up for long-term care insurance and choose the maximum benefit amount (indefinite term with highest daily benefit amount), if you can afford it. If you can only get a 3 or 5 yr policy, get it. Trust me, you will need it later. It will be very expensive for your family to care for you later and the long-term policy will help.
If officially diagnosed, ask if you still can sign up for LTC.
Second, as others have stated, seek an eldercare attorney to get all of your legal documents in order. Do it now when you are still able to choose who should act on your behalf later.
Third, ask your neurologist to see if you can enroll in clinical trials. You may benefit from them, and maybe get paid in the process.
Finally, call Alz Assn to get more advice on how to deal with this new circumstance in your life. They are wonderful.
Very sorry to hear about your illness. Now is not the time to feel sorry for yourself. It is time to do what you can for your (and your loved ones’) future. When everything is done, grieve. It is a long journey. Again, i am sorry.
If I were you I would look into Dale Bredesen, MD and his protocol which has had promising results in people with mild symptoms. He has a new book out, the End of Alzheimer's, which I have not read yet (it's next on my list) but as a result of listening to numerous interviews with him and reading about his protocol I am extremely interested in it and his theories. He seems like the real deal with some interesting ideas.
My heart goes out to you during this time and for your future. First off I would suggest all the things that (gladimhere) said-"Keep active, eat well, read, exercise, socialize all of which have been shown to slow progression. And make sure your legal documents are in place."From my own experience's from working as a nurse in Geriatrics with PT's with Alzheimer's ,caring for my Grandmother that had Alzheimer's, as well with my Mother, she had a different illness but the same outcome and dealing with my own "health" situations in my 40's now but was 39 when it began and I was told at that time I probably had less than 1 year. I say all of that just to tell you what I feel has helped me. When you get news like this first it feels very numb and distant.Once it sank in with me, I cried hard, I tried to pull back away from friends and family but thankfully the ones that really mattered stayed close.I prayed/pray A lot.I surrounded myself with peaceful,positive,good feeling type things.Of course I could not just let my health conditions go, but the most likely outcome I don't keep that as my main focus. I see each day as a gift, I'm sure to let my friends and family know how much I love them. For me that was my biggest anxiety, that I was afraid to be open about my feelings to certain people, the ones that really didn't like or feel the need to say " I love you". But I had to be sure that they all know how I feel.
Do enjoy every day to the fullest and do get your affairs in order. But you also should make a plan so you can end your life on your own terms without suffering the agony and indignity of dementia.
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Mthr investigated and made great choices, but if she'd only given us her AD we would have known she did not want to fight cancer at all. Give your loved ones a copy and let them moan - it's part of their grief for you. Accept their protestations as demonstrations of love, and stand firm in your decisions. Love deeply.
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this diagnosis must have come as a shock to you. Many commiserations. However, the great news is that progress is advancing by leaps and bounds in the development and rolling out of new therapies, drugs and care procedures, so the world may be very different in about 6-8 years from now: the disease could be halted or even reversed. We just don't know.
Meanwhile, with the right preparation, including the formation of new habits that will prove their worth later, you should be able to manage pretty well on your own without great anxiety for at least 6-7 years, probably longer, though of course everybody's brain is different, so there are no set stages for things to happen.
You do not tell us if you are living on your own or if you are surrounded by family.
You do need to tell family and close friends about your diagnosis and you do need to make it clear to them that "you are still you" right now, and that you intend to organise your future in order to avoid future stress on yourself and on other people.
I myself am a proxy for a dear friend, 12 years older than I, who is an expatriate and has no close family still living, just a few distant cousins. Worse, at the start of her illness, she concealed it from everybody (including me) for 2 years and managed to cut herself off from all her old friends bar one former boyfriend and myself, so all the burden of care, rather unfairly, fell on me. But there was nobody else until a notary was booked to take care of the financial side. I think this was selfish of my friend, because, as the saying goes, "a problem shared is a problem halved." And having more friends around, who had already guessed at her condition, would have made my life easier and her solo life in her apartment a lot less lonely, until she went finally (not before time) into 24/7 nursing care.
So:
1) Do read all the advice in the comments in this thread; it is well-meant and comes from the heart; you may not agree with all of it, but the writers do empathise with you and want what's best for you. Take detailed notes for later.
2) If you do not do this already, make a habit of writing everything down that you do in the day, or still need to do that day, in a small notebook that you carry round everywhere with you. Always put a date on the page, and start off with a time when each task is done (cross done tasks out with one line, so you can still see what it was.) Don't input into a phone but write the words with pen or pencil. When you note down phone calls (you called out or people contacted you) NOTE DOWN WHAT WAS SAID OR AGREED. Learn how to make short notes full of meaning to you; do bullet points etc.
***REASON ***** this pernickity habit will turn into your short term memory about 4 -6 years down the line; so if you do it now automatically, without thinking, it will be in your DNA half a decade from now and you will have a better "memory" that you will be able to rely on.
2) Take your Aricept (or other drug that delays the progress of the disease) religiously every day, but try to cut out other meds as far as possible, by eating good food and taking exercise. If you already have another chronic condition, OK, take those meds too, but ask your doctor to keep the number of pills to a minimum, and to watch out for those that cancel each other out.
Already start putting your pills into a weekly box dispenser that shows the days of the week, with slots for morning and evening.
*****REASON**** essential to know that you have taken the pills you need; cuts out anxiety. Also, years from now, your visiting health carers will be filling the pill box for you and can rely on your ingrained habit of taking the right pill at the right time. But you can take control by doing this now.
3) Plan ahead for your end of life; make a simple will now with a youngish notary and get it signed; he keeps a copy, you keep a copy, and a family member is informed where the copy is. Essential that your will cover your financial affairs including stating how you want your money spent at the moment you need to go into residential care - and if you are a property owner, at what point this property should be sold either to finance your residential care or to be inherited after your demise. Also state your wishes about your funeral (don't specify anything expensive unless you have set up a savings plan to cover the cost). Make a separate list of prized possessions that you want to gift to certain people.
*****REASON*** Do this now while you are still "of sound mind". If you change your mind inside a few years, you can always go back to the notary and update your will. If you hesitate too long, the whole ghastly business of proxies, family members interpreting your wishes etc will kick in, and your final living years and your passing could be fraught with problems and loud quarrels. So cut it out by stating your wishes early on, and specify the notary, not a family member, as the executor of your will.
4) Live your life as serenely as possible, and maintain an interest in the outside world and in other people's affairs. If you concentrate too much on your own situation, you risk becoming narcissistic and cantankerous later on when your autonomy goes. That's when the swearing and spitting and hostility can really turn off those who want to, or are paid to, help you. You can avoid that stage by deciding to accept help with good grace and by refusing to be stressed out by anything that happens to you
If you do draw up a "Do Not Resuscitate" living will, make sure that your family doctor and your notary and all close family members get a copy. There is a lot of literature about dignified dying. If your family already knows that 10-15 years from now you would rather be in a hospice and slip away quietly rather than in a hospital in an intensive care unit, get their agreement to this in writing, however informally, and give this to your doctor, as living wills are not legally enforceable.
***REASON*** nothing is worse than sitting or lying in a room with two or more people shouting at each other over your head about what should be done with you. If you already planned what should be done, someone else who is in the picture can stop them from quarelling.
5) Final word: you ask if you should feel anxiety. Probably you will be anxious, at moments in the far future, when you catch yourself forgetting how things work or where you are or what you are supposed to be doing. Doctors usually prescribe mild tranquillisers ("happy pills") to help Alzheimer's patients over this stage until they accept the new restrictions on their lives.
****REASON *** Alzheimer's will only blight your life if you allow it to. Right now, you want to do everything yourself but train yourself to accept with grace when, at some time in the future, some things will need to be done for you by other people. Smile and say thankyou when this happens, and you will find that people will be happy to go on helping you. Resistance and rebellion only lead towards the horrible (and avoidable) curse of narcissism.
******HOT TIP******Now is the time to go sightseeing, visiting friends, fulfilling your bucket list or wish list, and taking lots of photos as souvenirs that can be framed and put up in a large frame on a wall later. Pictures of you enjoying yourself are a good cheerer-upper a long long way down the line. Make sure you have good photos of family members too. Read those books, watch those films, walk those trails while you can, maybe invite a friend or take or borrow a dog to do your walking with, and live in the moment. Try to share these moments. If you can live in the moment, you will experience moments of being truly happy.
Sorry for the length of this post, but I wanted to get it all down in one go. Over ten years I learned a lot about looking after a person with true Alzheimer's (all there vs nothing there inside 10 seconds interval) who luckily was prescribed Aricept by a doctor who made a correct early diagnosis but did not "let on" for two years.
However, the happiest lady in the specialised residential care home is not my introverted friend but a new resident. She spends her whole time going round the residents, talking to them, looking after them and making them smile. I even thought she was a social assistant until I saw her name and photo on one of the doors. She is really happy, the nursing staff adore her, and she takes no tranquillisers at all.
So there is your answer: plan for the future but live in the moment and try to be interested in other people all the time. Let's hope that everything turns out for the best for you.
Live well. Live long. Live happy.
For example, are your legal documents in order? Will, health care proxy, Power of attorney? Are you married or designated a key person to help you along the way? Have you shared your wishes with that person? There are many other steps but let us know if you have this much done.
There are medications to keep it from progressing and you need to start them yesterday.
All dementia is affected by diet - malnutrition was linked to all dementia back in the 70's - you just never hear about that anymore.
The best thing you can do is to try to limit processed foods and get some exercise - walking helps everything and you can even do it in-home.
If officially diagnosed, ask if you still can sign up for LTC.
Second, as others have stated, seek an eldercare attorney to get all of your legal documents in order. Do it now when you are still able to choose who should act on your behalf later.
Third, ask your neurologist to see if you can enroll in clinical trials. You may benefit from them, and maybe get paid in the process.
Finally, call Alz Assn to get more advice on how to deal with this new circumstance in your life. They are wonderful.
Very sorry to hear about your illness. Now is not the time to feel sorry for yourself. It is time to do what you can for your (and your loved ones’) future. When everything is done, grieve. It is a long journey. Again, i am sorry.
I wish all the best for you for 2018!
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