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All behavior excusable??

My DH was recently diagnosed with ES AD. His behavior has already been changing. I understand it is not his fault, he cannot help the forgetting and the moodiness. But is there any accountability for behavior and actions? Am I supposed to look the other way and just accept all his behavior? What do I do with feelings of betrayal and anger? Swallow them? What will that mean for my mental health after a decade or more? 

For example, his family visited recently. I thought it was the perfect time to share his diagnosis since we were in person together. I brought up the idea a few times prior to their visit. Every time he vehemently refused to tell them. He said it’s none of their business. He was angry. I could not reason with him that his siblings would want to know and perhaps need to know, let alone I need others to know so I have support. I chose to honor his wishes for now. He then decided to tell them about a personal issue with me. I was livid. After they left I explained that I was upset and saw it as hypocritical, I had not even shared with my side of the family. He apologized and said he understood and wouldn’t tell anyone else. Since then I realized he has been telling anyone and everyone. I realize it’s likely he forgot what happened when he told his siblings and forgot I was angry about it. After getting mad at me for telling him I was upset and trying to tell me the situations were different, he again promised not to talk about it. 

Am I not allowed to get mad? Is all his behavior excusable? I have never been a doormat. I have always been honest about how I feel. Do I now have to accept everything and pretend nothing bothers me? Where would the anger go then? It doesn’t disappear. I am afraid it would build up and come out in a hurtful and regretful way. 

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  • M1
    M1 Member Posts: 6,723
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    Jella, understandably you are still expecting him to respond to rational arguments and discussion.  He can't and won't.  So yes, unfortunately, the one who has to change is you.  And there is terrible loss in that:  you no longer have the spouse you used to have.  

    I tell this story a lot here:  like you, I thought if my partner heard her diagnosis from our doctor, she would have an "aha" moment, realized she was impaired, and therefore defer to me in the areas that she needed to.  Our doctor literally laughed at me when I asked him to have a sit-down "come to Jesus" conversation with her.  It just doesn't work that way, and that is what you are discovering the hard way.

    You are going to have to learn to proceed on your own, and that is going to feel like going behind his back.  But you are the one who has to protect him and your family now---it's a transition from having a partner to having someone in an adult body who functions less well than a child that you have to care for as you would a child.  Yes, he will spread misinformation.  So:  you need to be the one to tell his siblings, and anyone else.  Pretty soon they will be able to see it for themselves.

    You will also have to lie to him.  Others here will call it "fiblet" strategies.  You are going to tell falsehoods to get him to go along with you.  The strategy becomes that you use whatever you need to maintain calm and promote the most comfort.  

    I'm sorry this is so hard.  It's a gradual process and a learning process for all of us.  To answer your first question, the only behavior that doesn't get a pass is threats of violence and verbal abuse.  If that starts happening, he needs to be hospitalized and medicated to control it.  Many times that's the end of being able to live at home:  that's what happened at our house, and my partner is now in memory care. 

  • Crushed
    Crushed Member Posts: 1,444
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    Jella417 wrote:

    . But is there any accountability for behavior and actions? Am I supposed to look the other way and just accept all his behavior? What do I do with feelings of betrayal and anger? Swallow them? What will that mean for my mental health after a decade or more? 

    Am I not allowed to get mad? Is all his behavior excusable? I have never been a doormat. I have always been honest about how I feel. Do I now have to accept everything and pretend nothing bothers me? Where would the anger go then? It doesn’t disappear. I am afraid it would build up and come out in a hurtful and regretful way.

     No the is no accountability whatever  and getting mad is useless
    which is why therapy helps  or watching Kung Fu  Panda

      https://www.youtube.com/watch?v=s0NS9smglHE


     I suggest you practice on a cat.  Tell the cat exactly what you want it to do and exactly how to behave .  Repeat 10,000 times or until you realize that cannot control a cat.  Alzheimer's is worse Cats are more or less rational,  people with Alzheimer's can be delusional or psychotic
     
    Ive been on this road 12 years I watched my wife go from being a brilliant loving dedicated public service physician to an inarticulate shell who has not known me for 4 years.
    She went to memory care when I could no longer keep her safe
      
     
      

  • Ed1937
    Ed1937 Member Posts: 5,084
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    Jella, you should tell those who need to know, but do it behind his back. Please don't bring it up to him that he has dementia. He does not need to hear it, and there is no upside to doing it. Those conversations need to be a thing of the past. 

    I am giving you a good link on understanding dementia. Please read it. It will be helpful. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

    Learning how to handle the things that dementia brings our way is an ongoing process. The more threads you read here, the more you will learn, and the more you learn, the easier it will be. You will get a lot of help here if you ask for it.

    Fiblets will become your friend. Tell him anything that will satisfy him, and keep him calm. You will benefit greatly from that. If you have any other questions, please ask for help.

  • Jella417
    Jella417 Member Posts: 31
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    Thank you, M1 and Crushed. I really appreciate the advise. I have never lied to my husband and can’t imagine doing it now. We have had such a strong, solid, almost perfect 20 year marriage. It’s all so different and has changed so fast. M1, I too originally thought if he heard the diagnosis from the doctor he would accept what I have been trying to tell him for a while, that there is something wrong. The doctor explained the impairment also impairs self-awareness and rationality, (you provided the term in another post but I forget the spelling). 

    He is already so angry that I fear for the end stages. I have already decided and explained to our minor children that there is one thing I won’t accept and that is abuse. What I’m hearing from you both now is that I have to find a way to accept everything else. Will I be so beaten down by the end of this? I am still relatively young. It’s all just so overwhelming. I am sorry to hear your partners are in Memory Care facilities. Does that make it any easier? Does it help to know they are safe and does it give you a break from all the stress and worry? I am so far from that. I have years of caregiving ahead of me while I try to work my full time job, which I have to keep. I guess overwhelmed is an understatement. 

  • Jella417
    Jella417 Member Posts: 31
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    Thank you for the link, Ed. I will check it out. I have always prided myself on not lying, to anyone and especially my husband. I guess in time I might realize it is the only way to handle things…
  • Rick4407
    Rick4407 Member Posts: 241
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    Hello Jella, sorry you have to be here.  For me the hardest part was "acceptance".  That is a slow process with lots of tears between now and then.  This will also be hard for your children.  Once I reached acceptance I could just rearrange my expectations and focus on how to meet each new challenge.  It is a one day at a time life for caregivers.  Just as others have, I started adjusting in small ways to each new challenge.  My acceptance and the adjustments came slowly.  In retrospect, that was good, like the frog in the pot.  Your children will also be making those hard choices.  You can possibly help and support each other.  In all probability they already know there is something wrong, try to help them by gently sharing the truth.   

    You have received excellent advice above and more will follow.  Read here often and ask questions.  There is a lot of wisdom here.   Good luck, Rick    

  • Ed1937
    Ed1937 Member Posts: 5,084
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    "(you provided the term in another post but I forget the spelling). " Anosognosia. Another link. Why your loved one doesn't believe they have dementia- It's NOT denial. 
  • John1965
    John1965 Member Posts: 104
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    Your story is giving me flashbacks. My DW was diagnosed at 50, didn't want anyone to know, and we had kids (13 and 19) at the time.

    Advice from the Alzheimer's Association on sharing diagnosis;

     https://www.alz.org/help-support/i-have-alz/know-what-to-expect/sharing-your-diagnosis

    There's good advice and caring on this site. A former member, Mac50, was in our boat (early onset, minor at home) and gave eloquent advice. I suggest you search her screen name and take a look at some of her archived posts.

    You are not alone.

  • Jella417
    Jella417 Member Posts: 31
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    Thank you, Rick. Although all these replies made me cry with the realization of how everything will change, having some answers and guidance does afford some relief. I am so happy to see I am not as alone as I have felt. This site will be the support I need. I can already see that. 

    The constant adjusting and accepting is really something. Just when I get used to him being one way, another thing happens. For someone who craves stability this is unnerving. 

  • Crushed
    Crushed Member Posts: 1,444
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    Jella417 wrote:

    Thank you, Rick. Although all these replies made me cry with the realization of how everything will change, having some answers and guidance does afford some relief. I am so happy to see I am not as alone as I have felt. This site will be the support I need. I can already see that. 

    The constant adjusting and accepting is really something. Just when I get used to him being one way, another thing happens. For someone who craves stability this is unnerving. 

    DWs decline was slow and steady and never hostile.  finances were not a problem our children were married  and soon having grandchildren So I have had it better then most

    But I have found the whole experience almost shattering.  Get help   

  • PlentyQuiet
    PlentyQuiet Member Posts: 88
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    Jella417 wrote:

    Am I not allowed to get mad? Is all his behavior excusable? I have never been a doormat. I have always been honest about how I feel. Do I now have to accept everything and pretend nothing bothers me? Where would the anger go then? It doesn’t disappear. I am afraid it would build up and come out in a hurtful and regretful way. 

    ---------
    The short answer is yes, all behavior is excusable, because the excuse is a progressive, life ending disease that he has no control over. The long answer is more complex.   You are allowed all of your emotions: anger, grief, frustration, despair, worry, etc.,.  Do not try to stuff them down, but try to find the best outlet for them. I have an IRL support group where I can vent and the real time feedback is so validating. This forum provides another outlet, and I have some friends who have walked this road before me. Most importantly I have a great therapist. That is a lifeline I could not be without.  

    These boards frequently have posts about how someone lost it with their LO that day. The almost universal response is that we have all been there. So, do your best to find relief valves for that stress but know that nobody is perfect. This is a long hard road. I hate it with a passion and we are still in the early stages at my house.

  • PlentyQuiet
    PlentyQuiet Member Posts: 88
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    Jella417 wrote:

    Am I not allowed to get mad? Is all his behavior excusable? I have never been a doormat. I have always been honest about how I feel. Do I now have to accept everything and pretend nothing bothers me? Where would the anger go then? It doesn’t disappear. I am afraid it would build up and come out in a hurtful and regretful way. --- The short answer is yes, all behavior is excusable, because the excuse is a progressive, life ending disease that he has no control over. The long answer is more complex.   You are allowed all of your emotions: anger, grief, frustration, despair, worry, etc.,.  Do not try to stuff them down, but try to find the best outlet for them. I have an IRL support group where I can vent and the real time feedback is so validating. This forum provides another outlet, and I have some friends who have walked this road before me. Most importantly I have a great therapist. That is a lifeline I could not be without.    These boards frequently have posts about how someone lost it with their LO that day. The almost universal response is that we have all been there. So, do your best to find relief valves for that stress but know that nobody is perfect. This is a long hard road. I hate it with a passion and we are still in the early stages at my house.  
  • Faith,Hope,Love
    Faith,Hope,Love Member Posts: 191
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    Hi Jella.  Welcome and I'm sorry you need to be here.  I've only been here a short while and have found everyone here to be so helpful.  I've always been a type A person that likes to have everything organized and all her ducks in a row.  I too like stability and having my DH diagnosed with FTD rocked my boat big time.  I spent the first 6 months going thru the grieving process.  I was angry, I had some denial going and all the other stages.  It was messy, but I got thru it.  By reading other posts and with the help of everyone here, I've established a new stability.  It's not what I'm used to, nor what I would like but it's working.  I still have days I get angry, but not as many.  M1's post described absolutely what I've gone thru.  I've had to change and it's only going to happen gradually.  Don't be hard on yourself and keep posting.  We are all here to help each other.
  • Jella417
    Jella417 Member Posts: 31
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    Thank you, PQ. I have already on a couple of occasions called my parents and yelled my frustrations at them. That has prevented a blowup at my DH and even allowed me to enjoy a whole day event with him when before the release I could not imagine spending all that time with him without telling him everything I was thinking and feeling. 

    I can’t afford a therapist. The loss of his income has really crippled us. He planned to work forever. I will soon seek out a local support group. I am working on figuring out what to tell him about where I am and trying to change from a very private person to allowing others in. This anonymous site is my first step.

    Thank you, John. I will search for her screen name and see what I can find. I wasn’t sure if there would be any others with minor children and still having to work full time. Usually both people are retired so one can care for the other. 

  • Hoot619
    Hoot619 Member Posts: 342
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    Jella, You are going thru what pretty near all of us are going thr.  This forum sure helps getting stuff out.  If we don't let others know what we are going through each day, it keeps building up inside of us.  We are only human we can only take so much, we have to let others know what we are going thru.   You may have to place him in MC for the sake of your children and you.

    Others will chime in with good suggestions, ones who have gone thru where you are at in this awful disease.   Hoot

  • John1965
    John1965 Member Posts: 104
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    I've thought of a couple other things:

     While most behavior is excusable, safety is also important. I had to "bark" at DW this week when she was "helping" make tomato sauce with our garden's bounty.  Twice she was about to reach into scalding water to grab a tomato to peel. Now I have to figure out how to stop her from sharing bites of food with our dog. She's always given him table scraps, but has recently started an unsanitary routine of "I take a bite, you take a bite." 

    Also, you are human and have limits to what you can endure. Don't beat yourself up if you ever snap and get angry with your DH. I've lost my temper a couple of times over the past 7.5 years and have forgiven myself for doing so. To be honest, it usually helped "clear the air" and opened the door for calmer conversation about frustrations. These incidents also improved DW's behavior for awhile after. 

    One more thing: Make sure to talk to your children's teachers and school administrators. You didn't give a lot of details, but I know that teachers and principals were helpful, especially in the early years, when our daughter felt she had to keep Mom's secret. Your DW may have the disease, but the entire family will suffer. Balance his wishes with mitigating damage to yourself and the rest of your family. 

  • Jella417
    Jella417 Member Posts: 31
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    Good advice. I will maybe reach out to the school. In addition to never sharing private information before I also am afraid of all the judgment and wrong special treatment he might receive. It is early and he can still do much for himself. I am going to wait a little longer so he is not negatively affected by others’ misunderstanding the diagnosis and his stage in the process. It’s a balance right now to protect him without shutting everything down. I have to let him be capable when he can while he can.
  • Crushed
    Crushed Member Posts: 1,444
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    Jella417 wrote:

    I can’t afford a therapist. The loss of his income has really crippled us. He planned to work forever.

    I now move on to sad  topic #2  You have just become poorer than you every thought possible
    Food bank poor
     
    You need legal and financial advice yesterday 
     
    What state are you in and how old are you and him and your children
    have you filed for Social security disability?    a good lawyer can help you back date it the first symptoms up to 9 months.  
    SS lawyers fees are fixed and come only out of back payment and are reasonabe 
    You need elder law advice


     
     
  • Crushed
    Crushed Member Posts: 1,444
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    Jella417 wrote:
    . In addition to never sharing private information before I also am afraid of all the judgment and wrong special treatment he might receive. It is early and he can still do much for himself. I am going to wait a little longer so he is not negatively affected by others’ misunderstanding the diagnosis and his stage in the process. It’s a balance right now to protect him without shutting everything down. I have to let him be capable when he can while he can.

    IMHO No no no no

    Your Titanic has just hit an iceberg and is gong to sink  Your husband will go down with the ship .  You dont want your children to go down too.
     
    Private information is A MIDDLE CLASS fetish   
    Worrying about reaction is a middle class fetish 

    If as you say you cant afford a therapist you cant afford  these middle class fetishes

    You have young children  you have to get them in a lifeboat
    You need help for them from every possible source 
     
    You will also need Medicaid sooner rather than later

    What is your own work and social security situation?  
     
      

  • Rescue mom
    Rescue mom Member Posts: 988
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    I used to ask the same question you did to start. Then it sort of evolved into “how far do we have to go to make/keep them happy?”

    I had to accept that I could have very few, basically no, expectations. My DH with Alzheimer’s would promise to do or say something—or not do or say something. Then he did (or did not) do what he promised. And he had no memory whatsoever of his promises. This was hard to take, but easier than some things later. I learned pretty quick not to count on what he said. He is sick; his brain is broken, almost literally disappearing.

    Compassionate fibs are often needed to prevent upsets. That’s not just catering to him, it also helps you b/c upset is harder to deal with. Your time and energy are important. Fibbing not only helps him stay calm, that in turn helps you. Sometimes it IS harder to fib, because you have to take control yourself, with no help or input from him. That’s terribly hard, but it’s how some things have to be now and more soon. 

    We can get angry, but that rarely helps except to vent. I consider a support group essential, both here and in real life. I do both. The IRL helps socialize, and if your experience is typical, friends and family will disappear. People who haven’t lived it rarely understand it.  Therapy helps too, but support groups are free, and in my community, led by trained counselors.

    IRL support groups are extremely helpful in finding local resources, such as lawyers, counselors, home help, doctors with dementia experience, etc. (You’ll find a lot here about how so many doctors, for example) do not. I stayed away from IRL support group at first b/c I thought it would be all huggy-feely, unicorns and rainbows, and I wanted practical help, not so much bubbles and head pats. But the practical, local help was the big thing; and that was where to get it.

    He will certainly change more, and if you’re like other spouses I know, your life is going to change enormously. I’d say totally, IME, except for things like yes I still have a house and a car and food. But any and everything that involved DH or his input….that’s changed.

    About telling others: I did so widely, when the opportunity arose. And honestly, most people could tell, after a few minutes, he was not “right.”  Rumors can start with no explanation…but I believe family absolutely needs to know. I also told neighbors, because they were likely to have encounters, and the more eyes, the better, IMO. Then others as needed. 

    It also helped, for a short time when we were out in public more, to have little cards printed up that said “my spouse has Alzheimer’s, thank you for your patience and understanding.”  Our local Alzheimer’s Association makes them to give to spouses.

    At restaurants, traveling, etc. I’d slip them the card when I couldn’t say it out loud. People were always understanding and helpful once they knew.

  • Rescue mom
    Rescue mom Member Posts: 988
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    Just saw the comment about your worry he might receive “wrong treatment” if others know. It’s highly likely he’ll be treated wrongly if they *dont* know. 

    my experience: I only learned much later there were rumors that my DH was day-drinking and abusing drugs (plus some other negative speculation) because of his odd behaviors and obvious  memory problems. 

    I was kind of used to his behavior (this was before Dx)  and didn’t always realize how it looked to others. But trust me, others Do notice. 

    He was asked to leave one board he was on because of that. After they knew Alzheimer’s, they apologized. He had to leave all others anyway, but they were handled very differently.

    One neighbor thought he was just being a jerk. That neighbor turned out to be the most helpful of all once told Alzheimer’s, and we absolutely needed that kind of help very soon.

    He was also working, and caused all kinds of big problems at work b/c they could see something was obviously wrong, but didn’t know what or how to handle it. So they shut him out, ignored him, worked around him, etc. He did pick up on that, and it was upsetting. Again, things would have been handled differently if they, and/or I, had known.

    Encounters with strangers while traveling, were really big, stark examples. Hotel/airline staff first would think DH was a jerk or drunk, and likely to respond strongly. But once they knew Alzheimer’s, they were universally helpful and supportive.

    Same for parties or informal groups. People who knew it was Alzheimer’s would make efforts to include him. Otherwise, they probably would have…not.

    Your DH life path is pretty much set now, but your children still have a life ahead and you’re the sole protector now.

    I assumed, because you have a Dx, that you’ve done the paperwork regarding DPOA, financial control, Medicaid considerations,  HIPAA, health care directives. Now from Crushed comments , I’m wondering about that??? If you had a plan before dementia, you probably need some big changes in that now.

    No one, nobody, can be a 24/7 caregiver for long without a lot of help and support. That means some people have to know. You surely know how high the death rate is for caregivers? That’s one of the most cruel things about this disease-it can destroy two lives (even short of death), not just the PWD. You have to think about your kids now.

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  • PlentyQuiet
    PlentyQuiet Member Posts: 88
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    Yes to everything Rescue Mom and John said.

    My kids were still in high school when this started and telling the guidance office made it easier for some rules to be broken. For example: normally you can't change classes after the start of the term. However my son had a class that was group project heavy and happened to have a bunch of kids he didn't like in it.  He got it changed. When mental health days were needed they cut him a bit of slack and let him have the option of skipping a couple of the smaller assignments. I look at it this way - we were given a massively bad hand, so we are going to feel no guilt when we use it to help us through. But that can't be done without letting people know. 

    I am also on the side of tell everyone. Once people knew they were so concerned about making him feel comfortable that they were able to gracefully go past the glitches in conversation and thought.  It has formed a protective bubble around him to allow him to continue on without worry. Think of it as a scaffold you are building in the background to ease the way for your spouse, and for your kids because they will benefit from seeing him well treated.

    EDITED TO ADD:

    We were lucky to have had DH's application for SSDI swiftly approved. Living on just that, while tight, can be done for us. It also means we qualify for the medicaid program for health insurance in our state. There is no copay for mental health services with this. That is the only way a therapist is possible for me. This will change early next year when he goes on Medicare. Explore all options, you never know what benefits there are.

  • Faith,Hope,Love
    Faith,Hope,Love Member Posts: 191
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    I agree that the more people who know there is a problem, the better.  It will make your life a little less stressful.  You won't be waiting for him to do something or say something embarrassing and then have to explain it.  What I've found out is that most people have a loved one or know of someone who has some form of dementia.  So, most people have already had that experience of dealing with someone with dementia.  Usually, they go on to tell me their experiences and I find talking with them gives me support and them too.
  • Belldream
    Belldream Member Posts: 42
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    I'm so very sorry Jella that you are having to go thru this! I understand completely. My highly functioning soul mate whom I shared everything with and who made all decisions with me and could fix about anything is now reduced to a child. He can't make any decisions, has delusions, makes scenarios up (by getting confused with news he reads on his phone and movies he's seen), and basically confuses me all day long. I have to now be a detective to decide what's real and what isn't and I have to be a mother to my grown child husband. I still keep getting caught in the trap of asking his opinion or asking how to do something, and then immediately regret it all when he flounders a response, refuses to make a decision, or worse becomes alarmed for no reason. I have learned (and am still learning) to "lie" because honestly you have to! It only causes more stress if I try to include him. He doesn't remember anything moments later. He can't process sentences any more either, I have to talk super slow for him to process what I am saying. I have to send all his texts for him from his phone, and I have to be on speaker for all his conversations so I can help with the conversation. I've told anyone who it matters to tell - our children, his and my siblings, my boss. Like someone else said - it will become apparent to everyone eventually anyway. My biggest challenge with this fiblet piece of it, is actually remembering myself that he needs me to do everything now and handle everything now, including every decision and advocating for him whenever we need to go somewhere or see someone (ie. making sure a restaurant has food he likes, bringing a wheelchair if necessary, arranging meeting times with enough time to get him out the door, making it clear we can't be rushing around at all for anything, and not putting him into situations where he feels embarrassed because he cannot communicate properly). And then finding the time and energy somehow to do it all.
  • Jella417
    Jella417 Member Posts: 31
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    OMG this is all so overwhelming and alarming yet appreciated. I’ll try to respond to all I can. Yes, we’ve spoken to an estate attorney and the necessary papers are being drawn up. I have asked if Divorce is the way to protect myself and him and it does not seem necessary. 

    Telling local people will affect his ability to work, he’ll probably lose his job which is the most important thing to him and will not be something that will go well when it happens. He still can work and we need the money. He no longer runs his business which is what I referred to about losing his income. That was our primary source of income and losing that was very hard on him. He does have a small side job. I do believe it will be easier once everyone knows. I do fear people are already wondering and that causes me stress. I want to tell my neighbors so they can alert me if they see something amiss or help if he becomes lost. I like the idea of handing out a card to people so they are more understanding. I have just now told one of his sisters and she is going to tell his side of the family. 
    I will say he’s 70 and I’m about 50, no where near retirement. He already gets SS retirement. 
  • Belldream
    Belldream Member Posts: 42
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    If he is still working and able to work, then you will want to be careful there for sure. My DH has been on SSDI for about 3 years now. So I can be a little more open with people for his safety and security. There are so many layers to this and only you will know how to navigate, but this wonderful forum can help guide you when you feel a little lost.
  • ImMaggieMae
    ImMaggieMae Member Posts: 1,015
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    Jella, welcome to the forum nobody wants to have a need to join, but is one of the best places to get information, advice, vent, or just have a (lot) of shoulders to cry on. We’re all at different stages of this horrible disease and I found that very beneficial. There is usually someone around, day or night to reply to a post.

    Initial feelings of impatience, frustration and anger are normal. At one point a primary care doctor told me to always have a smile on my face when talking to my husband who was then probably in stage 4 or 5. She also suggested aromatherapy.(!) That was before I discovered this forum. He was going through a stage where he would repeatedly ask a simple question, over and over again, every 3 to 5 minutes and then forget the answer. This would go on for hours. I screamed at him several times. It did absolutely no good to become upset at him. It confused him even more, made him anxious, and made me feel like s#*t. When he began to need help dressing I thought his staring at me when I told him to lift his foot to remove or put on pants was him being stubborn. I thought he should remember this. That part of his brain was breaking. He looked the same and acted the same in many other ways, but remembering this was impossible. I was angry at him and angry and beyond frustrated at myself for being angry. I finally got it through my head that kindness and patience was a better way to deal with this, I didn’t started smiling but I did talk in a normal but gentle voice and stated doing things like changing clothing in exactly the same way each time. It became a routine. Always the left food first, always the pants, then the shirt. I ramble on about everything, our day, the weather, whatever, while i’m helping him. He doesn’t have to understand, it’s my familiar way of talking and these days it’s always calmly. He’s cooperative and while he may not remember in the way he once did, he is familiar with routines.

    I agree with the advice to tell everyone you’re close to or who needs to know. That will make everything easier in many ways, not harder. No sense in waiting because this isn’t going to get better, although when certain behaviors begin to appear, there are medications that can be very helpful for many in treating symptoms. His primary care was not very helpful with this. A trip to ER and a week in the hospital with a good hospital psychiatrist got his medications straightened out.

    Many family members and friends will disappear upon hearing the diagnosis. Be sure to keep in close touch with the ones who remain. They will become even more important to you as time goes on. Make an appointment with a neurologist. Do it soon. It took us over 7 months to get in to see one. 

  • jfkoc
    jfkoc Member Posts: 3,776
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    Excusable?  Interesting to think over. I think yes but much harder to ignore.
  • Jella417
    Jella417 Member Posts: 31
    10 Comments
    Member

    It took almost 4 months to get our appointment with the neurologist. It’s at the end of September. His family doc could do nothing for us. Won’t prescribe medicine because it is a specialty disease. 

    Thank you all for your advice and support. It’s helped already. I feel lighter even tho I’ve read things about the future that scare me. 

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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