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    • CommentAuthorRona
    • CommentTimeJun 10th 2016
     
    Waning moon my wife was diagnosed in May of 2012 she just had her 56 birthday. We had been to a neurologist a year before but she did not compete the testing as my wife was too anxious so said she had to get rid of the anxiety before she could assess anything. When it is early outset we went through a lot of things prior to diagnosis , stress, thirode etc etc took a long time to get the diagnosis so in hindsight it had been going on for years first visible indicators I think when she was about 50 so when diagnosed we were well in to the middle stages. Now we are in the later stages well into stage 6. There is no normal but apparently early onset can be quite aggressive. I can say that once we got the diagnosis it was devastating but then we knew what we were dealing with and throughout the last 4 years we have tried to make the most of it. Lots of travelling bought a motorhome snd went south for a couple of winters. Now that is in the past too hard and we are on the list for placement which should happen any time now.

    Welcome it is a tough road and too bad you have to travel it. Just Here are a few suggestions, try and make the most of each day, when you decide to get help you are probably way past needing it so do it, get your paperwork In order, we all get frustrated and angry it is ok, come to this website often we all understand and it is full of advice from people who have travelled the road before or are travelling with us now. Good luck
    • CommentAuthorWolf
    • CommentTimeJun 10th 2016
     
    Welcome Waning Moon. My wife had early onset AD too.
  1.  
    My husband has early onset. If you haven't heard this, you will many times: If you've seen one case of Alzheimer's, you've seen one case of Alzheimer's. No two cases present, develop, or last in the same way. That said, and it is worth remembering, there are generalities. The Fisher Scale will give you some characteristics of the various seven stages.

    There is a wealth of information on this website with little gems studding the various threads. Here I learned about incontinence and how to manage it, favorite products and what to expect (well, that is an understatement). You learn to tell "fiblets" to manage the anxiety: No need to keep reminding your spouse that a sibling or parent died. Just say that they may call tomorrow or you talked to them and all is well. Reliving the anguish of a death every day is not beneficial to anyone. There are lots of good hints on redirection, which every caregiver must learn. Then there is placement: a huge, awful, heart-rending and totally necessary milestone. Knowing that that others have gone before you is comforting, if that is possible. This is an exclusive club that no one wants to belong to. But, the nice thing is, we are all there for you, for each other, and all of the new spouses who come along.
    • CommentAuthorLindylou
    • CommentTimeJun 10th 2016
     
    Waning Moon, you can also start your own specific discussion on various topics of immediate interest or need to you, and people will respond with understanding and suggestions and support. I am finding this helpful to me. I also read the past discussions and find there is much to learn.
  2.  
    Thank you all so much! I am impressed and appreciative of all the support. I love the suggestion of specific discussions also!
    • CommentAuthorAdmin
    • CommentTimeJun 13th 2016
     
    Cheryl1265, Lynn12345, DocBog, Cathy 120, ozarkhiker, and Waning Moon,

    Welcome to my website. My apologies for being so late in responding, but it's been a tough year for me. The one year anniversary of my husband's death is in a few days. I have barely been functioning this year, but I do want you to know that I am aware of your new membership, and I extend a warm welcome to all of you.

    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".

    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 for new blogs; news updates; important information. There is also a search engine at the top of this page for you to look up every topic we have discussed in the last 9 years.

    Please excuse the condition of some of the links in the Resource Section and the lack of new blogs. I am currently in the middle of a huge website renovation, and everything will be cleared up and in working order as soon as we finish the remodel.

    joang*
  3.  
    joang, I am sending you hugs and am so sorry for your loss. I am so thankful I found your website and it is reassuring along with also so sad to know we are all on here for what we have gone through, are going through, and will go through. I was told once it is a unique club not one of us wants to be in! I have read through a lot of the posts, past and recent and have found such helpful information. I am not sure how I found this site, but it was meant to be as I have been on sites, but not one devoted specifically to spouse/partner, and as you said the issues are so different than those faced by other caregivers. I'm not sure if I could listen to another person who "knows" someone with Alzheimer's and knows what I (we) are going through. I have a sister-in-law who keeps reminding me she took care of her Grandmother when she had Alzheimer's and knows exactly what I am going through, what I need and what I should do! But that is for another topic I am soon to post and start a discussion on! hahaha Thank you!
    • CommentAuthorpowdereast
    • CommentTimeJun 14th 2016
     
    My wife has early on-set. was officially diagnosed at age 49, clearly signs were much earlier. I suspect she is stage 5/6 right now. We have 5 kids ranging from 21-12. needless to say this has been very difficult on the younger ones. In many ways they don't know there mother at all. It is very difficult to find anything that really discusses what we go through as caregivers. I am hoping this will provide some respite for my very over active brain. Trying to balance caregiving, child raising and a job is certainly not the easiest thing I have have attempted.

    Looking forward to some good counsel and humor.
    • CommentAuthorWolf
    • CommentTimeJun 14th 2016
     
    Welcome Powdereast. My heart goes out to you. My wife first showed signs around the age of 52. She would have turned 65 this year. Everybody here has their own stories. We all do what we can in these difficult circumstances we face. Welcome.
  4.  
    Welcome powdereast, you certainly have your hands full! I can't imagine having children at home while dealing with this disease! As caregivers, I think only those of us who are doing it and have done it are truly the only people who can tell us they know what we are going through and we each have our own special stories! I find using humor (when it is possible!!) is one way I can cope! Our dryer went out last month and I was telling my husband the dryer was broken so we would either have to look into getting it fixed or buy a new one!( not that he uses the dryer any longer! ha) His response to me was :"So we can't take showers any more?" and I told him "Only if you expect to dry off in the dryer"! I was the only one who who got a chuckle, but sometimes it's just what we need!

    Wolf, it sounds like my husband was diagnosed the same age as your wife. Can you tell me if you thought the disease progressed quicker than you had anticipated? I find I can't quite keep up with the changes, they seem to be happening so quickly. I keep waiting for it to slow down and even out! I may be delusional!:)
    • CommentAuthorHeidi
    • CommentTimeJul 11th 2016 edited
     
    Hello everyone, husband 51 with early onset and I'm 45 years old, 2 children. Diagnosis 6 months ago and 4-5 years prior things started to become "strange". I guess everyone here knows what I'm talking about. The decline has
    become much more noticeable and faster the past 2 months. I'm struggling to cope and trying to adjust and react to
    everything, it seems to be an ongoing battle. I'm an RN and the diagnosis hit me really bad at the beginning. Then
    I thought I would take it in stride, but somehow it isn't working out that way. Sorry for my bad english, its gotten a bit
    rusty.
    • CommentAuthorRona
    • CommentTimeJul 11th 2016
     
    Welcome Heidi and yes everyone knows what you are talking about. This is a wonderful place filled with great advice and companionship, a safe place where you can ask anything or express any feelings you want without judgement. Everyone here is going through or has gone through what you are dealing with, not all of us with children at home but some. Nobody really understands what you are going through other than another alzheimers spouse. Good luck this site can be a real lifeline.
    • CommentAuthorLindylou
    • CommentTimeJul 12th 2016 edited
     
    I want to welcome you too, Heidi. You will find non judgmental friends on this site, who will understand what you are going through. Folks here will share experiences, advice when you want it, and perhaps most importantly support as you deal with situations and decisions you never thought you'd have to make. There are several ways I've found this page helpful. I've started discussions when I needed to talk with people who will truly understand my frustrations, and help guide me through them. I've floated through some, but not all, of the old forums and discussions to glean what I could from members who were on this site in the past. And I've found that I can add my experiences to help others too. I'm sure that those who have children at home will find you. I know that must be the hardest of all. Best wishes as you walk this very strange path that is Alzheimer's.
    • CommentAuthorHeidi
    • CommentTimeJul 13th 2016
     
    Thanks, I have been reading a lot of the posts. I'm not
    Sure where to post this, but I wonder if anyone's spouse
    here is in the aducanumab research program like my
    husband is.
    • CommentAuthorWolf
    • CommentTimeJul 13th 2016
     
    Hi Heidi. Welcome.

    Start a new discussion is an option in the upper left corner. Call it "Is anyone familiar with the aducanumab research program?" and mention that you're a new member here in the body of that post. There are other RN's here too. Welcome and I'm sorry you are facing this.
    • CommentAuthorpowdereast
    • CommentTimeJul 13th 2016
     
    Heidi, my wife (51) is in the trial. are you looking for information on side effects etc... more than happy to share. She's been on it since september 2015
    • CommentAuthorHeidi
    • CommentTimeJul 26th 2016 edited
     
    Hello powdereast, my husband gets the 3rd dose tomorrow, he started 3 months ago so it's to early for side effects.
    His AD has gotten worse the past 2 months, but I doubt it has anything to do with Aducanumab. How is your wife doing? I hope well, it's tough not knowing if it's the medication or a placebo that they are receiving. My husband is also 51. And I know it's tough on the kids too, I have 2 and you have 5.
    • CommentAuthorbhv
    • CommentTimeJul 26th 2016 edited
     
    Hello everyone. I have been "lurking" for years. Finally decided I might ask some of my own questions. DH is 73. Diagnosed as having dementia in 2015. I think symptoms started around 2009. Interfering with daily life in 2012. I am so grateful for Joan starting this website because it is COMPLETELY different being the spouse. Thanks to everyone for sharing support and so many tips to get through things!
  5.  
    Welcome BHV.
    • CommentAuthorladylimbo
    • CommentTimeJul 26th 2016
     
    Hi, not really a new member, signed up way back but never had the guts to start participating in the discussions. Well, I've posted two comments this evening and it felt fantastic. Maybe I can be of help to someone as this site has been for me, many many many times. Look forward to posting often...
    • CommentAuthorpowdereast
    • CommentTimeJul 26th 2016
     
    Hello Heidi,

    Thank you for asking about her. We are preparing to move her into Assisted living. It has just gotten to hard and the kids are suffering the most. Needless to say everyone thinks there is a better answer. But as you well know, as does everyone here, it is a massive effort emotionally and physically to deal with this terrible disease.

    My wife has been on the trial for about 10 months. We do know she actually had the real thing because she had some bleeding on the brain. We thought it was at least stabilizing but at about 6 months it seemed to really ramp.

    I will only add one thing. I think i was late getting her into an assisted living facility. Be very focused on the kid impact. I missed some signals that I know regret.
    • CommentAuthorHeidi
    • CommentTimeJul 27th 2016
     
    Hello Powdereast, tx for your advice. Emotionally it's really hard for the children. My older son is taking it harder, he is physically disabled (slightly) and had two bad years that he spent in hospitals, it all seems to be catching up on him now. Just got him into counselling. I hope you find a very good place for your wife. It sounds like not everyone understands your decision, but lots of people don't comprehend what it's like looking after someone with AD 24/7. Hunting for lost wallets, keys, mobile phones is the smallest problem. I hope you have friends / family that support your decision and understand why. My husband has to reduce work now about 50% and I'm not sure how that will work out. It's a huge balancing act and it's tough keeping up.
  6.  
    This is Edward a newbie here from canada, on anew journey discussing all about alzheimers
    • CommentAuthormyrtle
    • CommentTimeSep 10th 2016
     
    Hi Edward,
    Welcome. We have quite a few members from Canada who you will probaby meet on your journey through this site. Do you have a spouse or partner with Alzheimer's?
    • CommentAuthorBig Suze
    • CommentTimeNov 19th 2016
     
    My name is Susan--Bug Suze on this board. I am a mess. My husband was diagnosed with early onset Alzheimer's and vascular dementia several years ago--in fact he coped so well due to his naturally high intelligence that we missed getting him diagnosed soon enough. The family assumed I was driving my husband crazy, so they convinced him to throw me out of our house and to try to divorce me. My husband has been the love of my life, my only boyfriend, too, since 1964. All our adult children estranged me because he told them unspeakable lies about me, and refused to let me see the grandchildren. My husband told me I was a pig of a wife (and other unprintable things), and locked me in my room for months. I didn't understand why his personality had changed and why he hated me so much. I took care of him until he threw all my things out of the house and changed the locks while I was away at a university class. His brother bashed my car and told me I was evil. I had to rent an apartment for a couple months, but the promised divorce never materialized, so I moved back home to take care of my profoundly sick husband with no help and no suppor. In August, I was granted a 3-week respite, but during that time he attacked people and destroyed 3 different facilities. Now he is not allowed to leave (a danger to himself and others), and all the responsibilities of winding up a 50-year marriage have fallen to me. I miss my husband so much I can't stop crying, and our children don't care. I used to be a high school teacher. Now life has no meaning or purpose and I don't know how to go on without him. Even my friends have vanished and my church won't help "old" people. We have a big house I need to sell, but I don't know where to go. Starting over at 68?? I'm devastated. I visit him frequently at his home, but he doesn't know me, -and tends to physically hurt me when I visit. It's expensive to visit, too--a 4-hour trip--but I still love him, abusive or not. It's so sad. I'm desperate. I'm a widow but I'm not.
    •  
      CommentAuthorCharlotte
    • CommentTimeNov 19th 2016
     
    welcome Susan. So sorry for all you have been through. There are others that have had nightmare experiences like you that will be along. Since he is already placed, the thread for those that have placed will have lots of others who have had to rebuild their lives, find meaning and value.

    (((hugs)))
    • CommentAuthormyrtle
    • CommentTimeNov 19th 2016
     
    Welcome, Susan. It sounds like you've had a hard road to travel. If your husband has been found to be a danger to himself and others, he must be in a psych unit. Due to issues of liability, I'm very surprised that such a facility (or even a regular nursing home) would allow visits if there is a risk of a visitor being physically hurt. I hope you avoid going there until the facility gets things under control. Charlotte is right about others who have been able to rebuild their lives. I hope you can, too.
    • CommentAuthorLindylou
    • CommentTimeNov 20th 2016
     
    Susan, I had a friend several years ago who lost her husband to divorce, and while her situation did have fewer complications than yours does, she too found it impossible to cope. She too was facing the very real loss, through divorce, of her husband who had been her one love from teenage years. Her family was unable to help her. And we, her friends, although we cared,were unable to find ways to help her heal either. We did hang in as supportive figures in her life. What she proved to really need was counseling. And with counseling and temporary prescribed meds, she did get through her ordeal. Sometimes the pain one is experiencing is too hard for amateurs to be more than supportive figures in ones life. I think you'll find support here. But I want to encourage you, if you have not already, to consider finding a professional to help.It may well be what you need get through the maze of pain you are experiencing.
  7.  
    Hi. Jane in Houston, barely hanging on. Husband dx lewy body dementia a year ago but it took three prior to see about twenty different professionals. He is stable but less able most of the time then suddenly a raging psychosis comes on and he tries to break, hurt, scream, yell. Today, he's sweet again. 57 yrs old.

    Question I have is he was approved for ss disability, never yet declared incompetent but they want a rep payee and won't recognize my DPOA. Fine but can't he, we appeal or deny this payee condition when he still does all finances, with my eyes open, and doesn't need a rep payee yet. What are our remedies? Also, how do you change deed to my name when mortgage is in his name? What is the paperwork needed?

    This is a tough road and after reading some of your posts, I want to hug you, hold you, tell you that in time, we will be OK. Its just gonna be a long while. We never expected a terminal diagnosis but after five diff brain scans, only God can change this path so I will hold onto hope. Always Hope. Happy holidays to all even if we can have a tree or decorations or presents, I just keep our nativity out on the mantel year 'round so not to worry where it went!
  8.  
    PS I write a blog and column about dementia and animals. Would be happy to blog our journey here if you have an opening. Jane
    • CommentAuthorWolf
    • CommentTimeDec 17th 2016
     
    Hi. Welcome to the site. Everyone here has or is going through very similar experiences.
    • CommentAuthorRona
    • CommentTimeDec 17th 2016
     
    Welcome leveledbylewybody a wonderful site where everyone wishes they weren't here. The first question I guess is where do you live as laws, regs. etc can be different depending on the country, the province or the state. Good luck hang in there we are all here to support one another.
    •  
      CommentAuthormary75*
    • CommentTimeDec 17th 2016 edited
     
    I think that you should see an elder attorney. Many people here have and have been satisfied. Texas will have its own laws, which can changed every year, or new laws brought in. You need someone who is on top of it.
    • CommentAuthormyrtle
    • CommentTimeDec 17th 2016 edited
     
    Hi leveledbylewybody,
    If you go back and look at the list of discussion topics you will find just under all the "Stickies," a topic about Representative Payee status, which I brought to the top for you. Although it is an old thread, it's probably still applicable.

    I think the rules for Social Security are the same in every state, since SS is a federal program that is administered by the Social Security Administration, a federal agency. (This is confusing because the rules about Medicaid, which many AD patients rely on for LTC, are different for each state. But Medicaid is a federal program that is administered by the states. Although broad federal rules apply, each state has flexibility to design its own Medicaid program.)

    My husband's SS benefits have always been automatically deposited into our joint account so I never had occasion to deal with the SSA until he failed to get a 1099-SS form in the mail at the end of one year. I called the SSA and they told me I would have to be named as a representative payee just to get the form. (Since the last thing I needed was more paperwork, I thanked them for the advice and solved the problem in a different way.)

    Durable Powers of Attorney are not recognized by all entities. SS is one example. Another example is brokerage and mutual fund accounts. For many of those accounts you have to get something called a "medallion," which is issued by a bank. You have to go there in person and sign in front of a banker. (I'm not sure about the IRS - they have their own POA but I once used mine with them.)

    Good luck with this problem and welcome to the website.
    • CommentAuthorAdmin
    • CommentTimeDec 17th 2016
     
    Big Suze and leveledbylewbody,

    Welcome to my website, which I started in 2007, to help spouses like myself support each other in our journey through the Hell that is Alzheimer's/dementia. The issues and emotions we go through are so different than of someone caring for a parent. We all understand each other, and can give valuable advice and support. My journey is chronicled in the previous blog section, which you will find on the home page - www.thealzheimerspouse.com. I encourage you to read the topics that apply to your situation. I have been through it all - no one believing me, my sweet loving husband turning into a hateful aggressor, losing friends. All of those topics are also written about on these boards. Just do a search at the top of the page.You have come to a place of understanding. Take comfort in the knowledge that you are not alone in your emotions and experiences.

    FYI- the star after someone's name means that their spouse's battle has ended, and we are now widows/widowers.

    joang*
  9.  
    Thank you all for welcoming me and for starting this site and keeping it active even after you earned your star. I am pretty much alone in this. My parents are passed and only his mother is 1000 miles away in an assisted living with dementia. I was stunned how many friends disappeared, even those with strong religious backgrounds. No one offers to help out although some angels have helped financially during the year and a half fight to get his disability. To them, I am forever grateful. In my mid fifties, I am finally glad to have landed in a place where everyone understands.

    With Lewy Body, the roller coaster of weaker but nice, normal to something I don't want to even talk about is what is hard to wrap my head around. It is not a slow steady decline on the LB rollercoaster. I still remember him as the sweetest, kindest person and this is like grieving the person I knew for a few hours then he's back.

    Thank you for telling me what the stars mean. I send my love. It would help to know what all the other abbreviations mean like DH, etc. I can put in substitutions and make the post meaningful but a little index would help us newbies to this site, not to the disease, get it right. Best- always-- Jane
  10.  
    Jane, if you'll go to http://thealzheimerspouse.com/web-abbreviations/ you'll find what you're looking for. There's all manner of helpful information along the left margin of Joan's Alzheimer Spouse homepage at http://thealzheimerspouse.com/.
    • CommentAuthorpaulc
    • CommentTimeDec 18th 2016 edited
     
    [moved message to another thread]
    • CommentAuthorjulied
    • CommentTimeFeb 6th 2017
     
    My husband was diagnosed with early onset Alzheimer's six months ago. It already feels like years.
    He's 61. I've been "lurking" on blogs, and I've done months and months of research. I knew long before the doctor gave us the news that he had it. It's like a tornado has hit and I'm in shock trying to pick up the pieces. At the same time, I've had to get a full-time job for the first time in 30 years to try to make ends meet. I'm already so tired knowing what's ahead.
    •  
      CommentAuthorCharlotte
    • CommentTimeFeb 6th 2017
     
    Welcome julied. Sorry you had to join us. Have you applied for SS disability? If not, do it now. Since you have a diagnosis EOAD is fast tracked.
    • CommentAuthorjulied
    • CommentTimeFeb 6th 2017
     
    Thank you, Charlotte. I'm sorry too. I'm grateful at least there's someplace to go. We started receiving SSDI last month under the Compassionate Allowance program. So there's that. And I know this is going to be a long road. But how do I get used to having my husband there, but not there? I make all the decisions without him now. Does the sadness over that get better?
    • CommentAuthormyrtle
    • CommentTimeFeb 6th 2017
     
    julied, My heart just breaks for those of you who are hit with this in their early 60s and before. We are here for you.
  11.  
    You find a new normal every single day. Things will never be the way they were before. The sadness is always there but I suppose it just becomes a part of the situation like so many other things. You learn to comfort yourself, help yourself, take care of everything yourself while still having compassion and love for your spouse. It is all very one-sided emotionally but it doesn't mean that you will become cold and heartless. I could go on and on about what AD does to the spouse, both bad and good; I'm not sure that will be helpful to you right now. Just know that you eat the monster one forkful at a time, one day at a time, and one hour at a time. If you look too far ahead you will scare yourself unnecessarily.

    You can do this. Many of us have and while it is not an advisable way to grow as a person, it does change us, often for the good. Try to find something good about every day and something funny. Right now I am watching old Dick Van Dyke shows that make me laugh out loud (confusing the dogs, though). Once upon a time I never thought I would laugh again.

    Remind yourself every day that you can do this. Reach out to the members here for reassurance and support. You are not alone.
    • CommentAuthorRona
    • CommentTimeFeb 7th 2017
     
    Welcome Julied not a place any of us want to be but a place that is a lifeline for many of us. Come here often it is full of support and advice know you are not judged and you are with a group who gets it. Good luck.
    • CommentAuthorjulied
    • CommentTimeFeb 7th 2017
     
    Thank you all so much. I'm 59. I thought I'd be doing other things with my life at this point rather than write on blogs about Alzheimer's. I thought I knew how to deal with illness. I was the caregiver for two of my friends who died of cancer. And I am a cancer survivor. I also helped take care of my father-in-law in his final months of late-stage Alzheimer's. But he was 92. This is a whole new kind of awful I didn't know existed. Thank you for telling me I'm not alone, because it does feel that way.
    •  
      CommentAuthorCharlotte
    • CommentTimeFeb 7th 2017
     
    yes it is totally different when it is your spouse. Add to that when you are younger doesn't help. My husband was 60 and I was 55. Yes, all your hopes and dreams for retirement years are gone. I get through it by not thinking about the future - just living in the day, which is hard when you have to plan for the future of both of you and stay in the present.
  12.  
    The sadness is ever present. I was just so heartbroken for him. He was 56 at diagnosis. I was 52. Of course, like you, I knew 2-3 years before that. This is ground zero for understanding and support. You have a host of folks here that will listen without judgement and throw you lifelines when you think you cannot take another single step forward. Welcome to a place no one wants to be, but none of us could survive without.