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  1. #1
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    Oct. 7, 2008
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    Default Parents with Alzheimer's?

    I was wondering if anyone else has had any experience or is currently coping with a parent who has been diagnosed with Alzheimer's.

    I am 21 and currently a college student going to school three hours away from home. This summer while I was home my mom was hospitalized for increased confusion and memory loss and eventually diagnosed with early-onset Alzheimer's. She is only 56 years old. She stayed at a nursing rehab facility for 20 days while Medicare covered it and is now staying at my dad and her ex-husband's house for as long as she is well enough.

    It has just been so stressful dealing with all of the medications, watching her decline so rapidly and trying to find nursing homes or health care people to watch her during the days since my dad works 9 to 5. I also just found out she doesn't have Medicare Part D when I thought she did and so will be paying out-of-pocket for medications til it kicks in.
    So anyone have any experience with Alzheimer's of words of wisdom? (besides lots and lots of patience as I've already realized)



  2. #2
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    Jan. 13, 2003
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    My heart goes out to you.

    Both my parents had Alzheimers. My mother was also early onset and lived for 15 years with the disease with the last seven years in a vegetative state. My father developed it when he was about 80.

    Take a deep breath and have lots of patience with your mother. She will ask you the same question over and over and over again until you want to scream. But remember, she doesn't remember that she asked this question less than five minutes ago. I never had children, but my brother said the persistent "asking things again and again" is very much like dealing with a two year old, except the parental two year old never grows up.

    Spend lots of time with you mother while you can because she will eventually lose the ability to have a conversation with you and eventually may not even know who you are. Take this time to just be with her. Also, don't forget to tell her how much you love and care for her. Sorry to be so morbid or pessimistic, but don't leave things unsaid. When my father eventually passed, I was so glad I had always told him how much I loved him and that he was the best father ever.

    Also, please remember to take some time for yourself. I know you are out of the area, but do some things that you love to do and will make you smile. It will be very hard on you. It is truly "the long goodbye."

    Please PM if you ever want to chat. Extending cyberhugs to you.....



  3. #3
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    Aug. 10, 2008
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    Statesboro, GA
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    Do not give up your college education to stay with your mother. There are other adults who can make arrangements for her. There will be times when you think only you can do it - ask me how I know - but other people can deal.



  4. #4
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    Jun. 18, 2007
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    So sorry. Been there, still doing that. My Mom has early onset, and I tried my best to care for her here at the farm with me for three years. Nearly broke my own health and ruined my finances with it, dealing not just with the memory but with the delusions, hallucinations, and ultimately violence that she displayed.

    If you have any siblings or anyone else (your Dad sounds in the picture), yes, insist that they do their part. Don't quit college unless no choice. Take advantage of the support system around you. There may come a time when you are the only family member who really WILL step up - ask me how I know, sigh - but try your best to allow help from all sources who will.

    About the financial arrangements, I went through months of that with various programs. God bless the nursing home, who took her without payment arrangements while I fought it out, because I truly was about to break my own health. They had known my family for 8 years while both of her parents were there, so we were familiar to them. I applied for Medicaid, and it took the long, convoluted track as they said she was "too young" for this. I agreed, but it was a fact, too young or not. She wasn't old enough for Medicare yet. Medicaid finally came through - keep prodding at them gently, and keep reminding them of you. And try to control yourself on the multiple trips to the Medicaid office while the people being pregnant and jobless for a living sit there within hearing of the workers and talk proudly about how they are working the system, scheduling their kids just so to keep maximum, and have no intention of ever holding a job.

    Of course, the one thing about Medicaid is that you have to be flat broke. If your mother has assets, that is far harder, as they will have to be gone through first before you can apply. Does anybody have power of attorney? If not, somebody needs to get it ASAP.

    Best wishes.



  5. #5
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    Nov. 28, 2000
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    Ontario, Canada
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    I am really sorry for you, and for your mother - it really is a terrible illness.

    My fatherinlaw was diagnosed with it about 2 1/2 years ago.
    Initially he responded very well to the meds, and although he needed extra care, thank God for our health care system here in Canada - everything kicked in to try to keep him safe at home.
    Unfortunately as is the case, his condition declined.
    Around Nov of last year, everything accelerated in a downward fashion.
    He was hospitalized and is now in longterm care, and is in terrible condition. Cannot feed or toilet himself, cannot walk, does not seem to recognize anyone, including my husband, is violent towards his care workers.

    I am grateful for all the care and assistance we have received and continue to receive, and for the wonderful care he is getting...it is just so sad to see what has happened to this strong,handsome and proud man.


    My heart goes out to you and your mother.
    I think you have got excellent advice from previous posters. I might add that if you have an Alzheimer's Society in your area, they have support groups, counselling and much information.
    A FINE ROMANCE - JC Reg Thoroughbred - GOLD Premium CSHA - ISR/OLDNA Approved
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  6. #6
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    Aug. 22, 2000
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    CT
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    I'm sorry you and your mom are going through this at such a young age! My Dad developed it at about 75 but his disease progress was slow at the beginning.
    Keep in mind, that your mom is trapped in this confusing and scarey situation and her actions reflect that and the disease itself. While she is able to understand tel her that you understand that she is "still there" and that her illness is just getting in the way. I hadnt anticipated the mood and personality changes. Know they can also be a part of this and do not necessarily reflect on you or her care.
    It actually got easier for my dad once the disease progressed. Early on he was angry about his confusion and limitations and became paranoid. Once the fog truely set in, he didnt realize what he was missing anymore and has been more content. Dont be afraid to fight for some anti-anxiety or other psychiatric meds - just because her issues are related to Alzheimers doesnt mean she should have to be anxious or upset all the time. For my dad, the doctor pointed out that it may make him sleepy and less interactive with us, but I stated that his comfort came first and he agreed. I believe some families are reluctant becaues they feel like they may be "drugging him to keep him quiet" (which would be bad) but he needed the emotional comfort.
    Talk with her doctor about Alzheimer resourses. If s/he cant help, Google Alzheimers and her town and see what help is available. Because this is so unfortuately common, there are usually programs available.
    Talk with your family. This can tear you apart. Care is really difficult on the caregiver. The amount of care and supervision needed is a moving target and this leads to issues with relative acregivers and other relatives. Please plan for her to be in a good facility when needed. It is difficult to Alzheimer-proof a home and provide round-the-clock supervision when the disease progresses. A good facility can keep her safe and provide for her medical and hygiene needs. That allows family to be family and loved ones (even if she doesnt remember). I don't think your mom would want you to martyr your future and exhaust yourself doing all her physical care as her disease progresses. Take care of her. Take care of your dad. Take care of yourself.



  7. #7
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    Nov. 28, 2000
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    Ontario, Canada
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    Excellent post MsM.
    A FINE ROMANCE - JC Reg Thoroughbred - GOLD Premium CSHA - ISR/OLDNA Approved
    CSHA Brickenden Stallion Award Winner - for Performance offspring.
    Please visit A Fine Romance on FB!



  8. #8
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    Feb. 23, 2005
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    Spotsylvania, VA
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    Hugs. My mom had brain damage, not Alzheimer's, and it's a long lonely road. Please take care of yourself. At the end you need to have the resources to pick up the pieces and keep going.

    Try to remember when she says hateful hurtful things she really doesn't mean them.
    I wasn't always a Smurf
    Penmerryl's Sophie RIDSH
    "I ain't as good as I once was but I'm as good once as I ever was"
    The ignore list is my friend. It takes 2 to argue.



  9. #9
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    Jul. 14, 2000
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    midwest
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    My Pop was diagnosed with dementia when he was 76 and we lost him 3 years later when he walked away from home, got lost and wasn't found in time. He was always happy person, just confused though did get frustrated when he couldn't figure things out. I know dementia manifest in different ways with each person so we were thankful that the disease didn't make our Pop an ugly person.

    MsM gave excellent advice on all levels. For a short while Pop had a home health nurse who came in during the day and she was fabulous. The family has to spread the care around so that the primary caregiver can get some relief. And the primary caregiver must accept that they have not failed by not doing it all. There is no shame in accepting outside help.

    Do enjoy the time with your Mother as she is. My Pop lived 1500 miles from me and I fondly recall the last visit I had with him before his passing. He told me stories in his confused and muddled way, always going back to his childhood and life as a young adult. He thought that I, sitting in the porch chair next to him, was just some nice woman who had wandered into his house.

    If your Mother ends up staying at home it is imperative that a tracking device- a bracelet- be put on her. Many police and sheriff departments now offer these as a way to help manage people with cognitive disabilities. Check in your area.

    I saw this news story on Friday night and it made me gasp. My Pop was a Navy Medic in Korea. As shared above, he couldn't keep things straight in "the moment" but he remembered his past in detail and without error. Dementia is a strange condition but always remember there is a thinking person behind that stare. http://www.cbsnews.com/8301-18563_16...s-for-his-men/

    ((Hugs)) to you.



  10. #10
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    Apr. 17, 2002
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    between the barn and the pond
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    Default

    Early onset is aggressive and quickly debilitating in many/most cases. It is simply awful. We lost a good friend at about age 54 to it- at about age 50 he suddenly could not calculate a tip. it was a slow and sad decline from there.

    Let the doctors and nurses guide you- educate yourself but I think the biggest hurdle is just accepting it- we lost my FIL after a very rapid decline- he was slightly fuzzy for about a year then over the course of about 4 months he just left. A once kind and gentle and very intelligent man was now combative and afraid and sometimes aggressive. My DH wanted to see improvements and good days where they just didn't exist.

    I am so sorry. You are too young to be having to deal with this awful disease.

    I believe what commonly happens is the decline reaches the point that the autonomic nerves, the nerves that tell your body to cough if it has a tickle in it's throat, become involved. Once the autonomic system is involved, it is a matter of time before pneumonia or the like are the real problem.

    I just hate it for you.



  11. #11
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    Dec. 15, 2002
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    Canada
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    Default

    I'm so sorry, you are so young to be dealing with such a horrible disease. MsM made a great post, I agree with whomever said about making sure you continue your education. I can't offer any advice regarding health insurance as I'm in Canada. My MIL was diagnosed with early onset and it hit her shockingly fast. Please check out counciling and make sure to take time for yourself. Again, I'm so sorry.
    \"Throw your heart over the fence and your horse will follow\"



  12. #12
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    Jul. 14, 2006
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    I am so sorry. My heart truly goes out to you. I lost my grandmother to Alzheimer's last January and within the last 6 months my grandfather on the same side has developed dementia, probably related a series of mini-strokes. But they are/were in their late 80s or early 90s. My mother has aged 10 years in the last two. As difficult as it's been, I cannot imagine what you're going through dealing with the early onset variety.

    Others have given you lots of practical advice about power-of-attorney. Also consider, as the disease progresses and if it's consistent with your beliefs and your mom's beliefs, having a do-not-rescusitate order signed, meaning no CPR / breathing machines / shocking paddles should the heart or lungs stop. I work in healthcare and I have seen far too many people with dementia who end up lingering in the hospital, probably in pain, not able to tell us, not understanding what's going on and even if they live, never get back to where they were. Just my personal opinion, but I believe that when the mind is gone, taking extreme measures to maintain the body does not give a good quality of life. You have some time to sort out your thoughts. In an emergency or acute illness, it can be a real comfort to know that you don't have to decide RIGHT NOW if mom would want a breathing machine or tube feeds or whatever, because you've already talked about it.

    Remember that you are allowed to have your own life and you are allowed to be human. If or when your mother ends up in a facility, you are allowed to not visit every single day. If you visit 2 or 3 times a week, you'll sadly be doing far more than most do for their relatives. You are allowed to go on vacation once in a while, have dinner with friends or go to the gym or the barn. It's OK if you get frustrated and want to scream when you have the same conversation with your mother for the 1000th time. It's OK to just need a break, really it is. It's OK to have boundaries or things that you just can't do, for example, to not be able to bring yourself to bathe your mom or change her diapers eventually. Ask for help.

    Also, it helps to have a stock phrase when your mom says or does something outrageous, like "it's not her, it's the disease." In the early stages, my very gracious and proper lady grandmother would say the most crass and obscene remarks, wear completely inappropriate clothing for the occasion, accuse people of stealing or hiding things, walk in on people in the bathroom, you name it. It wasn't her. Whatever your mom says or does, it's not her.

    Hugs. I'll be thinking of you
    BES
    Proudly owned by 2 chestnut mares
    Crayola Posse: sea green
    Mighty Rehabbers Clique



  13. #13
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    Dec. 7, 2003
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    430

    Default

    Quote Originally Posted by BlueEyedSorrel View Post
    Remember that you are allowed to have your own life and you are allowed to be human. If or when your mother ends up in a facility, you are allowed to not visit every single day. If you visit 2 or 3 times a week, you'll sadly be doing far more than most do for their relatives. You are allowed to go on vacation once in a while, have dinner with friends or go to the gym or the barn. It's OK if you get frustrated and want to scream when you have the same conversation with your mother for the 1000th time. It's OK to just need a break, really it is. It's OK to have boundaries or things that you just can't do, for example, to not be able to bring yourself to bathe your mom or change her diapers eventually. Ask for help.

    Also, it helps to have a stock phrase when your mom says or does something outrageous, like "it's not her, it's the disease." In the early stages, my very gracious and proper lady grandmother would say the most crass and obscene remarks, wear completely inappropriate clothing for the occasion, accuse people of stealing or hiding things, walk in on people in the bathroom, you name it. It wasn't her. Whatever your mom says or does, it's not her.

    Hugs. I'll be thinking of you
    BES
    This, especially the first paragraph I quoted, is so true, and it's taken me 2 years to figure it out.

    My mom had a heart attack/triple bypass/stroke/2nd heart attack in Nov 2010. Since that time, she has suffered from moderately severe dementia (vascular demantia and white matter disease.) While she's generally happy and easy to deal with, I've seen some signs that there may be personality changes coming. And the same questions/conversations over and over... it is very maddening! But it isn't her fault, and I know that she hates feeling "stupid" when she occasionally recognizes that she's not able to think clearly.

    I was amazed at the amount of stress that caring for my mom put on me. She is in a modified independant living situation, but we have her on the waiting list for assisted living. I'm fairly certain the stress from this has pushed me into peri-menopause (althought I am 45, so it might just be my time...) And I had to learn to set boundaries for myself because the constant pressure of trying to do everything and seeing her everyday was causing me depression (which I've never had before...) I'm fortunate to have a great husband and a best friend that both gently remind me that I can't do everything for her, and that I need to take care of myself. I do have a brother, but he is basically useless in these situations (he has mild Asperger's Syndrome) and he lives 1500 miles away. So I do what I can, and remember that my mom wouldn't want me to ruin my own life to take care of her.

    My heart breaks for you that you are dealing with this at such a young age. Please do find a friend, family member or support group to help you through this. And please remember that your life and education are important, and shouldn't be sacrificed for your mom. I'm certain that she wouldn't want that.
    "Ponies are a socially acceptable form of child abuse." - said by a friend when asked if she was going to find a pony for her 5 year old daughter.



  14. #14
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    Jun. 18, 2007
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    Good point about the DNR. Legal paperwork can be forgotten and shouldn't. Get down any wishes she ever expressed in writing now. Actually, I have a "DNM" (Do Not Move) on Mom's chart at this point, that being my own decision but perfectly consistent with Mom had she been able to choose. I have told them that in case of illness (pneumonia, etc.), I do not want her transferred from the nursing home to a hospital. I don't care if it could be treated better in a hospital. Now that she has FINALLY accepted that facility, which took her a few years, I don't want to disrupt her environment just for "better" medical treatment that would only prolong things. If she could be cured at the hospital of this current infection but will likely die at the nursing home, then I guess it's her time to head on to heaven. No hospital for putting a Band-Aid patch on an entire failing dam. The staff didn't even blink at that, just charted it.

    Also, a book recommendation for you. It's a well-written book but also helps with some perspective. It helped me. Making Rounds with Oscar. It's written by a staff doctor on a dementia unit, and it's about the cat on the floor who predicts death. Don't worry if you aren't a cat person. The doc himself isn't a cat person, and this is not your typical snuggly, Precious is the most perfect kitty ever book. It's not about a cat; it's about end of life with dignity. Excellent book, and it flows well as a story, does not read like study materials for a test or a course in statistics.



  15. #15
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    Mar. 21, 2005
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    michigan
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    I deal with dementia patients for a living. I am so sorry that you are going through this. Please make sure that when you do put your mother in a facility, you really do your homework and find a place where she will be safe and loved. Find a place where the staff leaves you feeling comfortable when you leave, not feeling like your mother isn't going to be taken care of if you aren't there. Not trying to add more of a burden to your already over-burdened shoulders, but experience has taught me that not all care facilities are created equally and I want you to have the peace of mind that comes with knowing your loved one is in the best place possible.
    Lapeer ... a small drinking town with a farming problem.
    Proud Closet Canterer!



  16. #16
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    Oct. 7, 2008
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    Just an update on my mom a couple months later and more questions for those who have dealt with this. She has gotten a lot worse just in a couple months and I am wondering if she truly has Alzheimer's or something else is going on because it is progressing so fast. Of course the soonest the doctors can see her in January.

    Just in the last two months she now cannot really go to the bathroom without help, can't shower or dress herself without help, and can't remember conversations from 5 minutes prior. She also recently is having problems recalling people's names and the names of objects. She will be speaking directing to me and ask when "my name" will be home from school next. And will ask for example where "that big green thing I sleep in" is when referring to a green bedroom. She is also having strange issues swallowing to the point of sometimes making herself throw up. She is still living with my dad and her ex-husband but I also worry about my dad and the physical and emotional stress of caring for her. There is a nurse during the day, but he watches her when he is home from work. And I feel guilty that I can't be there, but school is three hours away from home and I try to come home as often as school allows me.

    I don't know if the progression this rapidly over two months is normal Alzheimer's progression or there is something else. She has very severe anxiety and will pace and cry literally 24/7 without a great deal of medication, but with too much medication she becomes a zombie who cannot carry on a conversation or has any personality. It seems like the psychiatrist can't find a happy medium. I'm also really worried because she has lost so much weight since being diagnosed. She is vegetarian and incredibly picky which makes things even harder. I'm just so worried about the future if things are this bad after a few months.



  17. #17
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    Jun. 21, 2003
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    Maryland
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    When you say the doctors can't see her until January, do you mean her general doctor or her psychiatrist? I'm curious to know about your Mom's treatment team. It sounds as if she needs to attention soon as you have several very legitimate concerns about her symptoms. Do you think you might need to try a different doctor? What medications does she take?

    I'm so sorry you and your Mom are suffering so. My mom had early onset at the age of 58 (age of official diagnosis) but had an obvious short term memory impairment from about 52 or 53 and had to stop working because of it. We eventually lost her to ovarian cancer when she was 62, so we did not have to go down the long and lonely road of Alzheimer's. Luckily my Dad was able to retire to look after her.

    You might consider joining an on-line support community like this one:

    http://www.inspire.com/groups/alzhei...on-of-america/

    If you're interested in connecting with others in your area, a website such as Inspire could help you. When I was diagnosed with ovarian cancer in 2010, and through the following two surgeries, I got invaluable support from some very wonderful people on Inspire's ovarian cancer site. It was also very helpful because my Dad did not want to/could not talk about my mom's treatment and death from the disease. I felt very depressed and alone, and I needed to communicate with those who understood.

    I'm glad you did reach out to us on COTH so we could share stories. Sending you support and loving thoughts. PM me if needed.



  18. #18
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    Jun. 19, 2001
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    Pacific NW
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    saitou_amaya, my heart goes out to you. It would be heart-breaking to see such a "young"parent go through this.

    My MIL who is 82 is showing symptoms of dementia, such as confusion, losing her wallet, and confabulation. As the DIL, I can't say anything or there will be adamant resistance. I'm not sure where to send my husband and his brothers to get her screened. They don't want to accept that there is anything wrong, but it is apparent to her friends and DILs. How did you get your Mom diagnosed? Did she go to the doctor on her own, or did you or your Dad insist she go?



  19. #19
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    Jun. 25, 2004
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    So sorry to hear of all dealing with Alzheimers.

    I have lost many friends and mentors to this disease, most recently a beloved uncle and now my BF's older brother was diagnosed.

    To the OP - get your mother into a DR asap. There are meds that may help with the progression of Alzheimers.
    There are other conditions that can mimic dementia and/or Alzheimers. So make note of all of her symptoms as well as any medications, OTC or prescribed, plus vitamins she has or is now taking.

    To everyone - take care of legal forms as quickly as possible, such as medical power of attorney, review the will, etc. This is what my BF is dealing with now with her widowed brother.
    "Never do anything that you have to explain twice to the paramedics."
    Courtesy my cousin Tim



  20. #20
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    Oct. 7, 2008
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    Quote Originally Posted by SaudiHunter View Post
    When you say the doctors can't see her until January, do you mean her general doctor or her psychiatrist? I'm curious to know about your Mom's treatment team. It sounds as if she needs to attention soon as you have several very legitimate concerns about her symptoms. Do you think you might need to try a different doctor? What medications does she take?

    I'm so sorry you and your Mom are suffering so. My mom had early onset at the age of 58 (age of official diagnosis) but had an obvious short term memory impairment from about 52 or 53 and had to stop working because of it. We eventually lost her to ovarian cancer when she was 62, so we did not have to go down the long and lonely road of Alzheimer's. Luckily my Dad was able to retire to look after her.

    You might consider joining an on-line support community like this one:

    http://www.inspire.com/groups/alzhei...on-of-america/

    If you're interested in connecting with others in your area, a website such as Inspire could help you. When I was diagnosed with ovarian cancer in 2010, and through the following two surgeries, I got invaluable support from some very wonderful people on Inspire's ovarian cancer site. It was also very helpful because my Dad did not want to/could not talk about my mom's treatment and death from the disease. I felt very depressed and alone, and I needed to communicate with those who understood.

    I'm glad you did reach out to us on COTH so we could share stories. Sending you support and loving thoughts. PM me if needed.
    Thanks for your reply and the link to the online forum. I think it would be really helpful for me because at this point I know virtually no one in real life who has ever dealt with this before.

    And when I said the doctor can't see her til January I meant the neurologist who deals with the Alzheimer's. She has seen a psychiatrist and GP recently. Without giving the name of the hospital away, in regard to the Alzheimer's, she is seen by the biggest and supposedly best hospital in Missouri and I feel as if I should trust them but at the same time I worry. She was admitted there in August for a good month and they ran tons of tests, which basically found nothing. Since they ruled out everything else, they feel its Alzheimer's but I was just not expecting this fast of a progression.
    And for those who asked about meds, she is on numenda and one other memory medication I cannot recall right now, but they don't seem to do anything.



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