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    • CommentAuthorAdmin
    • CommentTimeJun 1st 2015
     
    Metacomet,

    Welcome to my website. I have been reading your comments, but realized I had not formally welcomed you. As you are probably aware, I started this website in 2007, because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.

    From reading the comments you have made, I realize that you are, as most of the men are, more the "finding a solution", "fixing the problem" type of person than one interested in sharing emotions. Through the years of managing this website, I have found that distinction quite fascinating, but in any case, if you ever do feel the need to express your emotions or ask for emotional support, please feel comfortable in doing so. Only what you have put in your public profile is visible to others, so if you wish to remain anonymous, putting nothing but your screen name in your public profile allows you to be unknown.

    I don't know if I wrote this under any of your posts, but just in case I didn't - Sid's neurologist is a top researcher in the field of Alzheimer's Disease. He ordered Namenda when Sid was first diagnosed. Kept him on the damn stuff for 5 years. When I mentioned that I thought it was time to take him off of the Aricept and Namenda, he told me to take him off of the Namenda, because recent studies had shown that it has no effect. ???????????????????????????? Was I little annoyed, to say the least? I took him off immediately, and found absolutely no difference. Then we weaned him off of the Aricept. I didn't notice any difference there either. However, I should note that when he FIRST went on Aricept, there was a definite stop to his cognitive and behavioral slide. My guess is that its effects lasted a couple of years.

    The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience", and section on EOAD.

    Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.

    joang
    • CommentAuthorGawker
    • CommentTimeJun 21st 2015
     
    I'm brand new and just learning how to navigate the site. My wife and I are both 69 years old. She was a PE teacher and I was a HS Principal. We have two daughters - one is a veterinarian and the other is an executive at a large women's clothing company. We have 3 grand-kids, ages 2, 3, & 3.
    At age 58 my wife complained of difficulty organizing lessons and keeping track of young students. We both retired at age 59 and I took a job consulting which required frequent travel all over the country. At age 62, I noticed Mary Ellen having word finding problems and asked if she'd mentioned it to her GP. She did not deny the problem; in fact, reported frustration with it. Her Dr. set up MRI, CAT scan, psychological eval., speech & language eval. And neurological exam. All turned up negative except the eval by the Speech & Language Pathologist.
    About this time she was hospitalized on another matter and I requested a neurological consult from the Hospitalist who is a board certified neurologist. After reviewing her records he spent 1 1/2 hours talking with her. He then told me that in 30 years of practice he'd only seen one other case of primary progressive aphasia and was quite sure that's what her difficulty was.
    We began seeing more & more memory problems and her speech continued to deteriorate. She began weekly speech & language therapy and we made an appointment at The Memory Disorders Unit at Mass. General Hospital in Boston. There she was seen by a young female neurologist who had a comforting manner and established rapport immediately. After a PET scan she met with us, explained how this scan measured sugar uptake at the cellular level, and showed diffuse deterioration throughout the brain with marked loss of function in the Fronto-temporal area.
    This, at age 64 led to the diagnosis of early onset Alzheimers Disease.
    As the primary care giver I have stopped consulting and generally am with her 24/7. Her condition worsens, we're involved in several research projects which aren't designed to help her but expands our knowledge base. We now have a diagnosis of her having logopenia variant of primary progressive aphasia which is a form of Alzheimers.
    Now, at age 69, we've had driving evaluation at Spaulding Rehab, we see the neurologist at MGH every 6 months, we try to schedule an activity every day, and I'm going nuts. Thanks for being here. I need it.
    • CommentAuthorAdmin
    • CommentTimeJun 21st 2015
     
    Gawker,

    Welcome to my website. Unfortunately, at this particular time, I am unable to give you my usual welcome full of information, as my own husband just passed away from Alzheimer's Disease this past Monday. I will alert the rest of the members that you have posted, and they will welcome you until I am up to returning.

    joang*
  1.  
    Welcome Gawker, You will find good support here. All of us have been where you are and it takes one to have walked the journey to really understand what you are feeling and what you are going through. When you say you are going nuts, I totally get it. Please come here often and know you must get support for yourself or you will not make it. That can come in many forms--Alz support groups have helped me, this website has been a godsend. My husband passed about 7 weeks ago and I am now grieving even though I did not think there was any more grieving left after 7 years dealing with it. As time goes on, you will be faced with more and more challenges and you will undoubtedly have to make very difficult decisions. I do not say that to frighten you but to give you hope that you will get through it. As she deteriorates the bottom line is you will end up hiring people to come into the home or face the challenges of placement in a facility. I chose the latter. It was the best decision for me but each person is different and no one can tell you what is best for you except you. If you feel you need a break, I would encourage adult day care in your area or a respite for you so you can get away and have a break. Day care will give you a daily break and respite can give you a vacation break when you feel you need it. Remember you cannot save her--you can only save yourself. Caregiving without adequate support will literally kill you. God bless.
  2.  
    Hi Gawker. Welcome to this website…the place none of us want to be…but I found over the years caring for my DH (Larry) that this site was really the only resource that helped me (and I'm a nurse!), and the only place where the people really "get it" and can help with both concrete suggestions and with emotional support. The issues really are different for a spouse. It's not the same as if it is your mom, your dad, your old uncle, etc. My Larry died 9/2/14 (so it's been nine and a half months for me), and I can honestly say that it was only the people on this website who got me through it. Whether you're dealing with incontinence, falls, eating difficulties, medication issues, durable medical equipment, your spouses craziness, your own craziness, end-of-life issues, family matters, or whatever…most people--, even the "experts"-- don't really understand, although they probably mean well. The spouses and widows/widowers here will be more helpful to you than the professionals in some cases, so again, welcome.
  3.  
    Gawker, I can't find the thread with your leg cramp question. Per the pharmacist's recommendation, I always made sure Larry took a multivitamin with a good B12 complex in it. Pork is also rich in B vitamins. The neurologist put him on Soma (carisoprodol) , which is a skeletal muscle relaxant--seemed to help a good deal. My patients used to drink tonic water (contains quinine) which some of them thought helped, although if you read the literature, it says there isn't enough quinine in tonic water to make a difference. The old medication Quinamm (sp?) that used to be given all the time was discontinued due to some concerns about the cardiac effects…which leads to my next thought…on the very off chance that you have any old malaria medication lying around the house (i.e. quinine), do not try to use it for the leg cramps…people have done that, and ended up killing themselves from heart attacks.
  4.  
    Gawker, I use to have leg cramps durning the night. I would drink a glass of milk and eat a banana. Not sure if one or both were doing the trick. Hope this helps. Also you said that you plan an activity every day. Please don't over do. You need rest to. With my DH we did an activity once a week. He was happy with that. Sorry you have had to join us, but this is a great group.
    • CommentAuthorGawker
    • CommentTimeJun 21st 2015
     
    Thank you all so much for the welcome and to joang, my condolences. It's the little day to day irritations that I'm sure you're familiar with, that " no one understands". The big problems and issues will be consuming, but right now, trying to cope is becoming more and more difficult. When I said plan an activity every day, it might be a trip to the allergist for her shot; a 2 hour speech & language appointment; or a trip to the Outlet Mall to buy me underware. This past winter was a bear in New England and she was climbing the walls so I took $10,000 out of savings and we went to Florida for a month. I learned that the good rest stops have family bathrooms and that changing hotel rooms frequently is disorienting and confusing. We don't have much money saved but I felt that it was more important for her to warm up and visit with some friends and relatives while she could comprehend.
    We have long term care insurance ($215 per day up to $325,000) so if and when she qualifies for the insurance we'll be able to have home health aides or if necessary a nursing home.
    Today was Fathers' Day. One daughter and her husband and two young children came at about 11:30 am, had lunch, and stayed till 3:00. I made a potato salad, hamburger, hot dogs and sausages, a pasta salad, and homemade brownies. I vacuumed the house, cleaned the cats litter box and brought up the kid's toys from the cellar. My wife did the dishes (paper plates) and loaded silverware in the dishwasher. When they left, I turned on the TV to watch golf and my wife came into the room quite weepy. What's the matter? My daughter doesn't like me. I explained that this wasn't true and calmed her. Five minutes later she came into the TV room obviously angry. "I'm not sitting on my ass all day watching TV!" What do you want to do? I don't know. Go for a walk? No go to the swimming pool? No. Then two hours of silence.
    Her perception of all of these situations differ greatly from mine, and I understand that her perception is her reality. It's just that the stress, the tension, the not knowing what's happening is so hard to deal with.
    Just writing this is cathartic in itself. Thanks for "listening".
    • CommentAuthorMim
    • CommentTimeJun 21st 2015
     
    Welcome, Gawker (it almost sounds inappropriate, like you're being welcomed to the world of Alzheimer's Disease!!)

    You're quite right - just the writing & getting things off your chest IS cathartic. This is a great place to do that....
  5.  
    Hi Gawker...welcome aboard. and, Happy Father's Day. Sorry you couldn't enjoy just relaxing and watching your golf for a little while. Especially on Father's Day.
  6.  
    First of all let me say that I am not exactly sure how I stumbled upon this site, but am so glad I did...I am truly amazed at how many lives are affected by AD or dementia...I am 54 and my husband is 64...After a few well spaced what were you thinking episodes with him, it became clear in 2013 that something was up...the most noticeable of which was his increasing inability to find words for things...after the usual testing showed nothing abnormal, a brain scan showed some atrophy of the frontal temporal lobes...diagnosis from neurologist has been rather inconclusive as to whether its EOAD or FTD, even a consult with another neurologist wasnt conclusive...We have gone through many "phases" such as seeing things that aren't there and compulsive behaviours like going outside to check my car to see who is in it a minimum of 20 - 30 times daily...Initial MMSE score in fall of 2013 was 27/30 which indicates mild cognitive impairment followed by gradual declines to 24 and 21 as of last December...most recent test this month resulted in a score of 9/30 which is severe...Hubby is now incontinent, speaks very little and is likely to just repeat what was said to him back to me, fully mobile and from day one has never appeared to have any insight into there being anything wrong...For as bad as it sounds I can be very grateful that his personality has become very quiet, docile and generally agreeable, which is bizarre as he always had a very assertive personality so even though each day can have a stressful moment or two, I know it could be so much worse so I count my blessings where I can...The descent into this journey when as the caregiver you are so close to it, seems like a gradual slide, so much so that I don't find it strange in the least that I carry my stove element knobs in my purse lol....I just tell people I've changed my name to Alice, followed the White Rabbit down the hole and I now live in Wonderland with the Mad Hatter!!! Thank you for such an awesome site to come to !
  7.  
    29scorpio, we all welcome you to our dementia family. This place is wonderful and helped me so much as hubby declined. My husband was also,very calm and docile until the until the last 3 months when extreme agitation too over. Everyone is different with this disease so it is difficult to compare symptoms with another person. I hoped you are taking care of yourself as that is a huge factor on being able to survive this disease. Take are and again welcome
    • CommentAuthorWolf
    • CommentTimeJun 22nd 2015
     
    Gawker, keep talking because it's not only cathartic, it's also self instructional. It's how I went through it so far where I'm in the after stages. I learned a lot by doing that.

    29scorpio, welcome to the club nobody want's to join.
  8.  
    Yes, welcome to the merry band here in Happy Hollow.
  9.  
    Gawker-sorry you have to be here. I'm another RN who hadn't even heard the word Alzheimer's until it destroyed our world. This group will help you not feel so alone.
    • CommentAuthoryhouniey
    • CommentTimeJun 23rd 2015
     
    Welcom Gawker,a teaspoon of mustard works great for my severe leg cramps.(I hate mustard).My older brother used to put it in my dolls diaper and I thought she messed herself.But it worked so well I force myself to swallow it.
    • CommentAuthorAngel6
    • CommentTimeJul 9th 2015
     
    Hi everyone! I have been signed onto this site since May after googling many sites just to read about the same struggles I was having and this was the jackpot! My husband was diagnosed in 2013. I have been an RN for many years and have had experience on the other side of looking into a situation and felt in my heart at that time a deep sadness for what the families were going through. I was a hospital based home health nurse and therefore dealt with many of the social issues. Very few people I worked with knew of my home situation and the juggling I was doing to keep my job due to financial issues and insurance. Many time I would hear judging remarks about certain patient situations that other nurses were working with and my advice was don't judge until you have walker one day in their shoes. For the most part people were doing the best they could. So much to be done to get information to the public.I appreciate so much the work that Joan and everyone who posts have done. I made mental notes of things that seemed odd about my husband and when I felt this is not right I went to his PCP appt with him. The response I got from the PCP was not welcoming but asked, "what's going on you brought the big guns with you today"? I explained my concerns because my husband couldn't "remember" the problems he was having. Of course, it was "Stress". I am sure you can tell I am still angry. I insisted in Neuro referral which he made reluctantly. We made 2 trips to see her with no diagnosis,other health problems took center stage and had to have surgery on his intestine. To make a long story short I insisted his PCP order an MRI of the brain and the radiologist gave his impression and then in his handwriting that monster word, Alzheimer's. Tried him on meds but he was too far gone for them to help. Less the meds the better in my book. I am home now and full time CG. My children are awesome but live away from us. We moved here for self supporting missionary work. I did go to an eldercare lawyer just a few weeks after diagnosis. I could go on and on about what this disease has done to our lives but I would be preaching to the choir. Thanks for opportunity to tell this to someone who truly understands.
    • CommentAuthorJazzy
    • CommentTimeJul 9th 2015
     
    Welcome Angel6

    Your experience may help others here. It's not a club that is very popular but we're here wether we want to be or not.

    Hugs

    Jazzy
    • CommentAuthorCharlotte
    • CommentTimeJul 9th 2015
     
    Welcome Angel6 -sorry you had to join us.
    • CommentAuthorAliM
    • CommentTimeJul 9th 2015
     
    Welcome Angel6, Everyone here does truly understand. The kind members are full of compassion. Hope you find Joan's Place comforting.
  10.  
    Hi Angel6...I am also an RN (critical care) that didn't have a clue that Alzheimer's could strike someone in their 50's (56 at dx but 2-3 years to get the official actual words AD). I thought he was having major side effects and reactions to meds he was on for neuralgia due to back injury and surgery. I am so sorry for you both that you are on this journey! But, this site was/is a Godsend for me. So much info, tips and most of all...caring and compassionate friends to walk with you!
    • CommentAuthorAdmin
    • CommentTimeJul 9th 2015
     
    Angel6,

    I would like to welcome you to my website. My apologies for being unable to write my usual extensive welcome, but my own husband just passed away from Alzheimer's Disease 3 weeks ago. I am not up to writing much yet. But I have faith that our members will welcome you for me.

    joang*
    • CommentAuthorbobbie
    • CommentTimeJul 10th 2015
     
    Hated having to look for this board. The easiest thing is to keep denying there really is a problem. Our state board counselor recommended this site. So many of the same fears, reading the many comments here have helped convince me that that I am not just losing my mind. We have not gone for a diagnosis yet, I'm not sure if we should. My husband is physically and mentally worn out. No one tells me of any hope.
    • CommentAuthorbqd*
    • CommentTimeJul 11th 2015
     
    bobbie, as you have already found for yourself, this site is invaluable for information and support. It has been my lifeline for the last 2 and half years. I lived with my husband's disease for many years before it was finally diagnosed in 2012. You are not losing your mind, and reading and posting here will help you maintain it through the ordeal of being a care giver for someone with dementia.
    • CommentAuthorAdmin
    • CommentTimeJul 19th 2015
     
    29scorpio and bobbie,

    Welcome to my website. I am sorry I missed welcoming you, but as I am sure you are aware, my own husband passed away from Alzheimer's Disease last month, and I have not been up to writing much on the website.

    I started this website in 2007, because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.

    The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".

    Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.

    joang*
    • CommentAuthorbobbie
    • CommentTimeJul 20th 2015
     
    thanks for the welcome, even tho I hate being here and you hate for anyone to be here. But so much support and comfort.
    • CommentAuthorAngel6
    • CommentTimeJul 21st 2015
     
    Thanks for your kind welcome. Good to know of a place to go to when i am overwhelmed.
    • CommentAuthorzbusybee
    • CommentTimeAug 11th 2015
     
    Hello... my spouse has been diagnosed with alzheimers 3 years ago but symptoms were visible about 3 years before then. He is now 64 years old. My challenges are the same as others but I felt alone within my family as they never saw the slipping away in the same way that I did. Your blog is like seeing my life in motion with an affirmation that what I was dealing with truly was alzheimers and I am not alone. My husband has held his own and learned tricks to fool others so that his symptoms are not so noticeable. However, he knows he is slipping. Along with his many other medical issues, taking care of him can be overwhelming. I feel guilty when he forgot to take his meds, or take a shower, or meet some other medical need and quickly remind him that it was me that forgot to tell him.

    I was going to a support group but their family members were much further along than where we were in the diagnosis. When one of the members told me that what we were going through was nothing and dismissed what I was feeling, I stopped going to that one or any other support group. I am pretty reliable and self sufficient that I am able to figure out how to deal with issues. I'm coming out of the anger period and entering into the crying period. When I see another sign that he has slipped away, tears come to my eyes...but I wait to cry until I am in the shower where one will hear and know. After I retire I plan on attending some memory care classes and daytime support groups in other areas.

    I am still working full time but need to take time off each week for a doctor appointment. He has that many that he needs to follow up on. Thank goodness for a generous boss. My husband sleeps most of the day, I believe due to his medications so I am not concerned about leaving him home alone. When he is awake he watches tv. If by some small chance he uses his tools to be creative, he cuts his fingers or breaks something (not himself) in the process. I am waiting for my son to buy a house so that the tools can begin to 'disappear'. In the meantime, I am learning minor home repairs and trying to find a handyman who I can call when things breakdown. It's keeping up with what my husband ruins from his alzheimers that is wearing me down.

    However, in my debate for retiring I keep putting off the date. My fear is that his deep routed routine will be broken and he will slip faster, and yet, I want to be home to spend time with him before he forgets too many things. Money will be tight but we should be able to do just fine to meet our needs, and yet, I fear how will I make ends meet without his SS and pension. We are from the era where we did not have a savings for retirement. As you can see I go back and forth on my making any decisions.

    We are also the guardians for our 17 year old very independent grandson. I could not have survived this past year without him. As he get closer to going away to college I am afraid of managing each day's activities. The alzheimers has affected him as well as he gets angry but is better maintaining composer than me. He does have a safe house that he frequently goes to get away from the trauma. One more year is all I need and then he will be deemed an independent person... one more year until he goes to college.... I need one more year.

    Alzheimers is a horrible disease.
    • CommentAuthorzbusybee
    • CommentTimeAug 11th 2015
     
    Joan... I do send my condolences and appreciate the time you took to document your days with alzheimers. I know that your blog is going to help me and others understand the disease and help us process the course we will follow as a result of the disease. Thank you.
  11.  
    Welcome zbusybee. Have you consulted with an elder care attorney? You should be able to still draw his SS and pension. If you haven't talked with a good attorney please consider doing so. It may ease your mind considerably. I am so sorry that you are feeling so alone. You are among friends here and we certainly "get it".
    • CommentAuthorzbusybee
    • CommentTimeAug 14th 2015
     
    I have done all of the legal work on my own but realize that I do need an attorney to review and finalize the legal documents. I have the will and advanced directives. The house has been put into a trust. My name is on all of the bank accounts as well as my son. My husband's name has been taken off of everything. It was like a divorce...but I think we are in good standings legally.

    I am replacing all of the appliances in our home before I retire. They are old and I don't want to have to think about them breaking down at any point of my husband's disease. This should feel more exciting to get new appliances but it feels more like a drudgery for a job I have to do before I begin imposing on others for help.

    I try to plan for and anticipate for his medical needs. Even the car we have is one that 'fits' him.

    I know that the color black is like looking at a hole so I have changed everything out to white or a lighter color. I will need to change out the kitchen floor...it needs it because he has flooded it a couple times 'fixing' the water purifier on it and so the floor is popping up... but am taking it a bit slow. My husband doesn't handle change well and I want to get the appliances in before I change out the floor.

    I like to plan things but realize that you can't plan for Alzheimer's....so I've planned the things I can control. I also want to get these things while I am still working. It's nothing more than to give me peace of mind. It's just reassuring to see that what I am experiencing has also been experienced by others... I read their posts for guidance and advice. Isn't that why we are all here?
    • CommentAuthormuldi
    • CommentTimeSep 2nd 2015
     
    My name is Diane and I live in WA state. I have been 'lurking' for over a year here unable to even write. I am 68 and my husband is 92. A year ago I had to move us to a retirement community exactly as Joan describes in her blog. Most of my reasons were the same too. However, I am also disabled and that has made things even more difficult. I have help ,but I still feel overwhelmed at times. Family comes and it looks easy to them. They don't understand all there is to do. I go to sleep quickly, but wake up early and often can't get back to sleep. I also have the same reaction to living here as Joan, watching the residents with walkers go by the window, seeing neighbors quietly slip away. There are only two people here my age. I am not social, tho and have a couple of activities I enjoy doing. But it is still lonesome and depressing. I was stunned to see others remarking, as I had only thought to myself, that I feel like I might die before my spouse. I don't mean to sound so depressing. And I am so grateful for this blog.
    Joan, you are truly and inspiration in so many ways.
    • CommentAuthorCharlotte
    • CommentTimeSep 2nd 2015
     
    Welcome Diane - I live in Richland, WA. Sorry you had to join us, but glad you did.
  12.  
    Welcome Diane, I live in Ohio. I am the same age as you. Please check in often and let us know how things are going. We do understand so well what you are experiencing. God bless.
    • CommentAuthorAliM
    • CommentTimeSep 2nd 2015
     
    Diane, I will add my welcome. I live in western NC, and turned 68 two days ago. Being lonesome and depressed seems to come with ALZ caregiving. Everyone here understands.
    • CommentAuthormuldi
    • CommentTimeSep 3rd 2015
     
    Thank you all! Glad to be here.
    • CommentAuthorKathleen
    • CommentTimeSep 4th 2015
     
    My husband was just recently diagnosed with Alzheimer's and it is early onset because he is younger than 65 being 62 years old
    • CommentAuthorCharlotte
    • CommentTimeSep 4th 2015
     
    Hi Kathleen. Sorry you had to join us but this is a good place to land. There is tons of information in the old threads and Joan's blogs, plus tons of support. My husband is 67 diagnosed at 60. I am 62.
    • CommentAuthorAliM
    • CommentTimeSep 4th 2015
     
    Welcome Kathleen. Glad you found Joans' Place. My DH is 70 and was diagnosed in 2008 although the signs were there for several years before. We will support you with the first hand knowledge that we have.
    • CommentAuthorKathleen
    • CommentTimeSep 4th 2015
     
    I appreciate this a lot and was wondering if caregivers tell friends or not in beginning of the illness?
    • CommentAuthorJazzy
    • CommentTimeSep 5th 2015
     
    Hi Kathleen welcome. Joan will be along soon to give you info in her site.
    To ask your question, sign in, go to upper left to start discussion. Put in your topic then ask ?. You will get lots of comments there. I did tell friends at DX and they disappeared off the face of the earth. Would I do it again? Yes as it sure cleared out the crud in my best friend list. Those who did hang around were the best.

    Hugs

    Jazzy
    • CommentAuthormyrtle*
    • CommentTimeSep 5th 2015 edited
     
    Hi Kathleen, Welcome. To answer your question, I told a close friend about 2 weeks after the diagnosis but did not tell my sisters or close local friends until about six months after that and did not tell my out-of-town friends until a year after the diagnosis.

    There were several reasons for this timing. My husband did not want to talk about it at all but he did want to go places and do things that we had talked about for years. When he was diagnosed, I fell apart and felt I needed some space to get my feet back under me. I knew people would want to talk about the subject or ask questions all the time. Another reason was that I knew that my husband would be treated differently, and I wanted to delay that. When I finally told people, I had more information and was able to talk about it without getting hysterical.

    I think it's different for each person. We didn't have children and my husband was not working so there were no adjustments to employment. We were very home-centered and did not have a big social life - just family and some close friends. I have never liked being the center of attention and I don't get much comfort from people gathering around me and getting emotional on my behalf. That is just my personality so I adjusted the timing and delivery of the news to accommodate it.
    • CommentAuthorRona
    • CommentTimeSep 6th 2015
     
    Hi Kathleen sorry you have to be here. Like jazzy we told people who were close and who we spend time with right away and feel for us it was the best thing to do. Otherwise Lisa was always self conscious, worried she would say something wrong and just look stupid. She would not want to interact with others. Once we got it out it was a relief and if people disappeared so be it. Well for us very few disappeared in fact most wanted to know how they could help and are very supportive. Unfortunately we had moved to a new community just prior to diagnosis so most friends are not close at hand.
    • CommentAuthorxox
    • CommentTimeSep 6th 2015
     
    Welcome Kathleen. I know how you feel, my wife was diagnosed with FTD at age 50.

    Since he is under 62 do you feel that the diagnosis fits? Look into other types of dementia, FTD and LBD, which often get initially misdiagnosed as Alz. If you think this might be the case consider having your husband see a neurologist familiar with types of dementias other than Alz.
    • CommentAuthorQueenB
    • CommentTimeSep 19th 2015
     
    Just found this website when researching side effects of Aricept due to my husband's complaint of loose and frequent bm's. At age 65 (2012), My husband was diagnosed (by a neurologist) with "Mild cognitive impairment". Looking back, I realized he had been showing symptoms for at least 18 months prior to that but was attributed to the fact that his hearing loss was deteriorating (he started wearing hearing aids in his 40s). After this diagnosis, I started doing some online research and discovered the Byrd Alzheimer's Center in Tampa and made an appointment for a complete evaluation. At age 66, he received a definitive diagnosis of Alz and was prescribed Aricept. Namenda was added in 2014. I have been very fortunate to find that our local Alz Assn has support groups and have been attending those on a regular basis. At first, I found most people there were care giving a parent or grandparent and that many of my concerns re my spouse were not being addressed. However, the group is now about 50/50 and we even have a separate group called the "Supper Club" which meets once a month (a local nursing home provides the space and a meal free of charge!) for spouse care givers only. I would urge all caregivers to contact your local Alzheimer's Association as many programs are available which are extremely helpful. I am blessed to have strong support from my family as well. My husband is now 69 and this past summer we have a noticed some considerable decline in his cognitive abilities. At his appointment next week, we will be asking some serious questions about the medications and whether they should be discontinued. Anyway, sorry this first post is so long but I'm glad to have found this site and will be checking back regularly.
    • CommentAuthorCharlotte
    • CommentTimeSep 19th 2015 edited
     
    Welcome QueenB. Yes, Aricept and the other dementia drugs can cause loose stools. They also will cause more stomach acid to be produced which made my husband's reflex worse.

    Feel free to start a new thread to ask your questions.
  13.  
    Welcome aboard QueenB!
    • CommentAuthormyrtle*
    • CommentTimeSep 19th 2015
     
    Hi Queen B, It is so sad when people in their sixties and even younger get this disease. I'm glad that you and your husband have a good support network. I hope tbat you will also get useful information and support from this site. I know I have.
    • CommentAuthordivvi*
    • CommentTimeSep 19th 2015
     
    Welcome to all the new comers. its apparent Joans website has a lot of referrels and that's so great that others are directed here. without this site most of us would not have made it thru the other side. my DH has passed recently but there are many of us older members who were here thru the thick and thin of the caregiving years. so many past posts to read thru and find important info. those of you who have posted above are no longer isolated and alone, and will find solace knowing others are here to help guide and support along the way.
  14.  
    My name is "Sass" and I somehow found this site shortly after my DH was diagnosed at the age of 58. He is now 61. I am 8 years younger than him. I read this for encouragement and education. I've never posted before now. Quite frankly, I set up the account and then didn't post and then forgot my login! I am still working full time with a child in high school. He's a junior. My daughter is in college and my older step children are adults and working. My DH is the father of all of them, but sadly my son is the one who is subject to the brunt of this disease since he is still at home. My DH initially presented with primary progressive aphasia as his most prominent problem so he cannot carry on a conversation and hasn't for probably the last 2 years. I speak for him, interpret for him, try to read his mind and pretty much handle everything. As all of you have attested to, it's exhausting. It's been 3 years and I can't imagine much more of this. I already have someone who watches him all day while I work. He's a type I insulin dependent Diabetic so that complicates things even further. He can no longer adjust his medicine although he can still inject himself. He's already started exhibiting some anger issues so he's on medication for that. He's on quite a few things. Not sure his Nememda and Aricept are doing him much good anymore but I keep him on it. I find that I am having more difficulty maintaining some semblance of a life. I, like those on this site, just try to take one day at a time. Some are good, some are "ok" and some are awful.