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  1.  
    This is my first time posting, and I am new to the site. The sorrow has been overwhelming, but I've tried to not burden my adult children. I mostly mention things my husband has started doing or chsnges(he now leaves doors open, including doors to the car, and I have to check so many things to prevent problems). My children listen, but when I say something like "it is all so stressful" or "it's so hard" to my daughter, she never says anything back. My son lives very far away, and I work a lot of hours, so I don't have many people I feel comfortable talking to. Friends just sort of fade away because I didn't have time to invest in those friendships. I don't like to talk very deeply to the few friends I do have because I don't even understand this situation, so hoe could they? And, it is so hard to share because you never know what you'll get back. It hurts so much that my daughter won't even offer a word of comfort any more. My husbsnd's erratic behaviour and unkind Ness was so hard over the last 5 years that she might have just gotten sick of it. I get a strong sense that she judges me for not being strong enough. My word, how I try. But how in the world do you give up on encouragement from the one person who lives close enough to understand, and how in the world do you ask for encouragement when your husband with his disease needs it so much more? Alzheimers has stolen any real relationship with my spouse and has stolen my future (my spouse has early-early onset), but I cant allow it to steal my relationship with my daughter too. It is all just so hard.
  2.  
    Sorry for the typos -- posting from my phone
    • CommentAuthorlindyloo*
    • CommentTimeJun 4th 2018
     
    Welcome, Mme, to the club no one wishes they need to join.

    I want you to know that I found this web page was the only place I could allow myself to fully “vent”. I did not have to hold back for fear of burning out a friend or family member. And I was talking here to people who really “get it” and understand. On this page we do not judge. That is what makes it safe for all of us to be real when we share issues.

    You will find emotional support here. You will also find good advice from those who are going through or have gone through the problems you are now facing. As you are going through problems bring them here and find out how others are dealing or have dealt with them. You can use the advice if you find it helpful, ignore it, fine tune to your situation, or save until it is appropriate for you. Also there is a wealth of information in back pages. I never did read it all, but I did go back and read quite a bit.

    No one can do the caregiving you are attempting without support. It is impossible to do alone. And yet burning out family and friends can be a real danger as you are discovering. I am hoping you are, and have been, searching out community resources. Doing this allows you to find out some resources that you can maybe use now, and others that you can look to in the future.

    Friends and family are unique to each individual. I was fearful of burning people out. My son knew the situation, cared too deeply, but I was too far away for him to really help much. I asked him to call every other day or so and jibber jabber. I purposely kept the conversation light for the most part without burdening him too much. I “used” those long calls as a temporary “escape” from what was overwhelming me. It was helpful in its own way and I felt loved. I never denied to him that this was the hardest thing I ever had to do.

    Friends, I found, helped when they knew what they could do and it wasn’t too threatening. So I made a list. (Number one on my list was just being able to socialize with them. Jibber jabber rather than burden.) But some friends will just disappear.

    Others on this site will be along shortly to meet and greet you. We all look forward to getting to know you.
  3.  
    Welcome, Mme Benton. Yes, as Lindyloo says, we have all either been there are are still there, fighting in the trenches. Everyone here "gets it", and most have had the experience of losing the person who is your other half while being incredibly burdened with the care. Some have placed their spouses and some have kept them home, but all have dealt or are dealing with the grief, fatigue, frustration, financial hits, sometimes physical danger...and I have not even mentioned Poop Patrol...another activity that most "civilians" never have to deal with. Isolation seems to go with the territory for many, as family and friends distance themselves. One thing you didn't mention was your finances. Remember to start getting him off the accounts--make sure he cannot have anything to do with the money--get your advance directives in place--it is imperative that you have a Durable Power of Attorney so you can handle everything as he becomes more disabled--as memory, judgement, etc. go south on the long downhill slide. Maybe you could let us know very vaguely where you live? We have members in both the USA and Canada--and a couple other places, if I remember correctly--and the rules are different. Also, how old are the two of you, and is he a military veteran? If you can focus us in a bit more, if you don't mind, we can be more helpful with concrete suggestions. (Early-early onset sounds horrendous--early-onset is bad enough!) As Lindyloo said, you need to find some resources for real help. (Not all resources and community supports are supportive...it's surprising how many agencies that are supposedly there to help you don't really "get it.") Anyway, I'm sure others will be along to greet you and offer some more ideas. Again, welcome to our merry band here in Happy Hollow.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 4th 2018
     
    By 'early early onset' do you mean he is in the early stages of the disease or he is very young? It helps to understand what you mean. Early (Younger) onset AD is when diagnosed before age 65.

    Elizabeth is correct in getting all the paperwork - financial, DPOA, wills, end of life decisions, etc all taken care of. If he fights doing Durable Power of Attorney which includes everything including medical and financial. If you husband is under 65 and not working do not delay in applying for SSDI. If someone has not worked in the previous 5 years they are not eligible.

    when you are ready please share more.
    • CommentAuthorWolf
    • CommentTimeJun 4th 2018
     
    Hi Mme, welcome to the site.
    • CommentAuthorAug44
    • CommentTimeJun 4th 2018
     
    Mme, I find it's very difficult for others to understand the real and complete experience of the caregiver. I certainly know I didn't understand or grasp what it meant until caring for my DH. Like the Elizabeth said, even the professionals frequently don't understand.

    Also, if you can stomach it, I think doing your homework so you are prepared for what is to come makes it a little easier to shoulder. If I had known how difficult this disease would be on my DH, I would not have had DH's gall bladder removed when he reached the end of stage 6 and not treated the sepsis. Sometimes exits are blessings. I hope that does not shock you...

    It can take some time to find a good dementia or alzheimer's support group whose participants understand the current stage of the disease you're managing, but I believe if you can find one, it's worth the effort.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 4th 2018
     
    Aug44 - don't worry about being honest. Many of us here pray for something else to take our spouse vs going the course of the disease. Knowing what anesthesia can do to our guys and gals with dementia, I don't think I would ever OK it. I would vote for comfort care and let him go. Why would I want to allow him to have surgery and take a big dive into dementia land afterwards? What would be the point or benefit to him? Nothing in my book. That is how I feel anyway.

    I agree - the education this site has given me the last 9 years has let me know what is to come, what is common or may happen, not to panic. I think people not understanding I know this information has made them question if I really am aware when he has more losses. They just do not understand the education this site has given me.
  4.  
    Thank you all so much for your helpful comments. My husband's disease started getting really noticeable 5 years ago when he was 52. He started losing jobs because he couldn't do the work anymore. He has always been in charge of everything, so getting the finances out of his control was a battle. But, he had paid our taxes twice and taken on debt without letting me know, so I knew it was time. I applied for social security benefits, and the 3 required dr and psych consultations all agreed he has Alzheimers or dementia, but I've heard horror stories about having to get a lawyer to get SS to accept him. I have no idea how much that will cost and am scared to find out. Every day I worry about funding the future and experience a lot of panic about this to the point at times this winter that I honestly felt so worthless. I just sat and cried reading all of your comments because I haven't been able to explain how hard all of this is to someone who can understand. I live in rural Oregon over an hour from a city with an Altzheimers care group. Ours shut down before I could attend. I'm hoping that another will start. So far, I've only checked the Alz association website. Thank you so much for sharing your time to talk to me. I feel so alone.
  5.  
    By early early onset, I meant my husband got in probably in his 40s when he started acting so impulsively. But, he is still able to talk and drives to about 2 or 3 places regularly with the GPS guide (and, his driving scares me because I don't know which day will be the day he shouldn't have been driving, but I haven't got the sense yet that he shouldn't do any driving). He is continent. He remembers almost nothing short term. He continually tells me things happened that didnt. His reasoning is gone, and he refuses to eat much more than about 5 or 6 foods. He refuses to eat the healthy foods I make except for a few bites. He gets very agitated if crossed or if someone disagrees with him. He asks the same question over and over and has lost a sense of propiety. So he doesn't seem to be in mid or late stages, but I don't know. His mother had this, too.
    • CommentAuthorlindyloo*
    • CommentTimeJun 5th 2018 edited
     
    Mme, It is not that expensive at all for a lawyer to assist you to get husband on ss disability. And attorneys will generally talk with you free for your first consultation They will let you know costs at that time.. The fact is you probably don’t need one at all. But my partner and I chose to use a lawyer in order to be sure that all that i’s were dotted and the t’s were crossed. It was simpler and far less worrisome to know the application was being done right the first time. The cost to your family is minimal compared to not having the regular income coming in. Also SSDI assures that your husband will get the equivalent of full ss. Find a lawyer who is experienced in doing it. (We used the yellow pages to find an attorney who specialized in ss, but referrals from others you trust might work as well.) It sounds to me like you have your ducks lined up just fine, there should be no question that he is elligible. Don’t let fear stop you.

    Been thinking about your relationship with your daughter. She is grieving as much as you about the dad she is losing. Very possibly she is angry too that life is putting her, your dad and you in this situation. She may not know how, or be able, to give much emotional support when she is needing it herself. If she is not in full blown denial, ask her to do small things that can help you. Going with you to the lawyer's office might be one of the things you can ask of her.
    • CommentAuthorCarolVT
    • CommentTimeJun 5th 2018
     
    Mme Benton, an additional support site that would be of help to you is www.ftdsupportforum.com. I read posts there and here every morning and both are of great help to me. The ftd forum includes all kinds of dementia because getting a specific diagnosis is so difficult for most of us. That site is well monitored and very protective of privacy. You can search issues and read little by little, remembering that not every thing you read about will necessarily happen to you. FTD arrives earlier than Alzheimers, so you may discover a new way to look at some of what is happening in your circumstances. Participants are very supportive, as they are here.
    • CommentAuthormyrtle*
    • CommentTimeJun 5th 2018
     
    Bonjour Mme, Welcome to the site. You and your husband are so young to be facing this. Which is all the more reason you need to see a lawyer. You will probably outlive your husband for many years, so you have to plan for that. You need a lawyer who specializes in disability and elder law. There are more lawyers than are necessary for the U.S. population, so there have got to be some decent lawyers available to you. There must be a bar association in your county. Lindylou is right - a lawyer should be able to tell you what the cost will be before you hire them.

    As far as other people understanding what you are going through, this disease is very isolating. Not everyone is suited to listening to tales of Alzheimer's woes, and that might apply to your daughter, even if she is not grieving. If I were you, I would try to find someone else to talk to, whether it's a therapist or a support group. Use your daughter for some other purpose, as Lindylou suggests. Also, don't just go on the Alzheimer's Association's site. Call them. They may know of some resources that are not listed online. This disease isolates us and that isolation is dangerous.

    Finally, accept the reality that if you don't take control of the situation, it will take control of you. So you need to start thinking about a long term plan. You're working long hours now, but what will you do when your husband can't stay alone? Will you keep working and have someone else take care of him? How will you pay for that? Or will you cut your hours or quit? If so, what will you do about money? You don't have to answer all these questions at once but you do need to address the issue in a general way, so you're not overwhelmed later.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 5th 2018
     
    Hi Mme. Many of us have no one else to talk with. I have relied on this site for the last 10 years. In FB there are support groups for anyone and one I know of just for spouses, but this site has been my rock all these years. It is not as active as it use to be but as we get more newbies speaking out the rest will show up including many whose spouse has died (most have a * by their name).

    Maybe your daughter would be interested in either the Facebook groups or a newer one that is mixed with spouses, siblings, and children caring for loved ones called www.myalzteam.com and /www.alzconnected.org/discussion

    Where in Oregon do you live? I live in the Tri-Cities area of eastern Washington. I grew up in Tualatin, OR though. My email address is listed in my profile if you ever want more support.

    As for SSDI - if you have to hire an attorney it will not cost you anything up front. They take a percentage of your first SSDI check. Early Onset is suppose to be fast tracked so praying yours will go through without any problems. It took three months for my husband to get approved - he was 61 though.

    My husband won't eat fresh fruit or veggies anymore. The only meat he likes is chicken and polish sausage! We have pizza once a week which he eats. At day care he gets 'Meals on Wheels' but not sure how much of it he eats since probably half of the meals consist of foods we never eat (like asparagus). He is not loosing weight so must be eating most of it.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 5th 2018
     
    Driving issue:

    As to driving, they say to ask yourself the question: would you feel safe with your kids or grandkids riding in the car with them?

    That was never an issue but if it was my answer was yes until he got to a point. Final for us was when he got behind the wheel of the motorhome, drove 15 minutes and then said he couldn't do it anymore - too much processing I guess. I also asked him 'if you got in an accident would you be able to remember what happened to tell the police?" He knew he couldn't.

    Other considerations regarding driving: is his insurance aware of the diagnosis? I didn't realize but every renewal you agree you have no medical conditions that can impair you driving. The insurance needs to know, you need to know if they will cover him if he gets in an accident. Some insurance companies, after they have lost/given up their license, if they drive will treat it as an unauthorized driver like they do if a teenager takes the car without a license.

    There are some states I have heard that if they get in an accident even if not their fault, can be blamed once it is found out they have dementia. Unfortunately I think there are only three states that require doctors by law to notify the DMV when someone is diagnosed with dementia.

    Also, if he does cause an accident, because of the diagnosis you could be sued for everything you have and loose it all. In our sue happy society this is not uncommon.

    You say he uses GPS. What happens if it makes no sense to him any longer? What fear would he have if he could not find his way home? What if he just keeps driving and winds up miles away lost? (that has happened to more than one spouse here). My FIL stopped driving the day he got lost going home from the store and drove around for 5 hours until he finally made it home.
    • CommentAuthorSedgly
    • CommentTimeJun 5th 2018
     
    Hi Mme,
    I also am rather new here, have only posted a few times. Have you already applied for social security? I've never heard of 3 required doctors visits. I applied for Jim just over 5 years ago. I got the application off line but took it to my local office. I had to point out to the woman working there that EOAD was on the compassionate allowance list. I had all medical records etc attached. He was approved in 10 days.

    We did have to wait 6 months for the first check, which no one had told us, and 2 years for Medicare.it all went quite smoothly and when he turned full retirement age (I think it was 67) they switched it to regular social security instead of disability.
  6.  
    Thank you so much for the info on the insurance and the SSI. What is EOAD? What is a "compassionate allowance list"? Thank you also for your perspectives on my daughter. Idk why this week has been so additionally difficult, but I am so thankful for someone to talk to. I am just so tired, I guess, and this disease requires so much selflessness. It is all scary.
    • CommentAuthorSedgly
    • CommentTimeJun 5th 2018
     
    EOAD is early onset Alzheimer's disease... when Alzheimer's is diagnosed before age 65.

    Compassionate allowance is a list of diseases the social security administration developed for fast tracking as too many people with serious ailments were dying while waiting for approval... I don't believe Alzheimer's was ever added but, early onset Alzheimer's was.

    I faced the same reaction from most of our children...the girls ignore it, don't want to talk about or discuss it...the boys are just plain angry... I've heard it said that anger is sometimes easier to feel than grief.....
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 5th 2018
     
    EOAD - Early Onset Alzheimer's Disease now they are calling it Younger Onset. They passed a law to fast track EOAD under compassionate allowance realizing that when the disease hits at a young age it put a financial strain on the family. see https://www.ssa.gov/disabilityresearch/fast-track.htm

    I did not need three doctors either. I had just his neurologist and all his test. He did have to appear before their doctor who said 'there is no question so we will just chat' which we did. My husband was 61 or 62 at the time. We always planned on him taking early retirement which they started first then switched to SSDI which gave us a higher amount - the amount he would have gotten at full retirement age.

    they are working on getting eligibility to Medicare sooner because many will go those 2 years with no insurance.
    • CommentAuthorpaulc
    • CommentTimeJun 6th 2018
     
    Mme Benton, welcome to our group. Please start applying for SSDI for your husband. You may not use a lawyer for the initial application, but can use one if you have to appeal. Social Security sets the payments for lawyers and it comes from SSDI back payments I believe. Apply online, it isn't hard but be sure you have lots of medical documentation that your husband is not able to work at any job.

    Based on age and a few things you mention your husband might have Frontotemporal Degeneration (FTD) and not Alzheimer's. Most neurologists are not familiar with FTD and often given an incorrect Alz diagnosis. Even with knowledgeable neurologist FTD is very difficult to diagnose. If you want to further explore this possibility go to https://www.ftdsupportforum.com as suggested by CarolVT to get familiar with FTD and look for the closest center for FTD experts, usually university hospitals that work in this area.

    As to driving, I suggest stopping it completely. Besides endangering others, an accident, even if not his fault, can bankrupt you. Ask the doctors to report him to the DMV (you don't want him blaming you for losing his license). Does your insurance company know about his diagnosis? If not, they can refuse to cover any damages if he is in an accident and the other party can sue you for every penny you have. Contact the insurance company and ask if they still cover him given the diagnosis. If they say no you tell him he may no longer drive and blame the insurance company. If they say yes then insist you get this in writing from an insurance company lawyer, someone telling you something over the phone will not protect you legally.

    Unfortunately we often not progression after something bad happens. You don't want that bad thing to be an auto accident. It will also be easier for him to learn alternative means of transportation now. As time goes on it will be harder for him to adjust to changes.
    • CommentAuthorSedgly
    • CommentTimeJun 6th 2018
     
    After rereading your post above I see you said you have already applied for social security already. And already had the 3 doctors visits. So, how long ago was this? Hope you hear something soon.

    It's great that you have already taken control of finances. It is the one thing I wish I could go back and do much sooner.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 6th 2018
     
    As to doctor records, when I sent in my husband's application I sent a copy of all his medical records from the neurologist including test results. I did it because I had heard it is not uncommon for doctors to take their sweet time in send the records or never do which can be a reason for delay they don't tell you. It think they give a time frame for the doctor to reply and if they don't, they deny the case. There is a place for further comments on the application I think where I pointed out why he could not work (or was in a separate letter), including would you trust someone to work for you who can't remember what they just did, can't follow direction due to not remembering etc.

    As Paul and others pointed out, if you get denied then look for an attorney who specializes in SSDI denials. When you do win the first check will go back to the application date and it is from those funds the attorney gets paid, so you have no out of pocket money to pay.
    • CommentAuthorRona
    • CommentTimeJun 6th 2018
     
    Welcome Mme Benton I am another one who has relied heavily on this site. As well in hindsight it was in 2006 when the first signs became noticeable my wife is 62 now so that was at about 50. Tough tough go we are in the final stages now. YOu have to make sure that when you do get through it you are in good enough shape to rebuild your life that is not being selfish it is a reality. I agree with the others comments get your house in order and it shouldn’t be you but the DR. that pulls his license you should have a talk with the DR. About that. NO help here as I live in Canada and so the system is different but still one thing in common it takes time so one word by the time you start thinking about needing assistance or placement then it is already past time, in other words do things now. If you wait until you know it is time things don’t happen over night it takes more time from there. I learned that. YOu are young you have a life ahead of you so Please care for yourself.

    There is no judgement on this site, no wrong or right, there is just understanding and compassion plus a lot of good advice people here get it they are living it or have lived it. Good luck come here often we are all here for each other.
    • CommentAuthorRona
    • CommentTimeJun 6th 2018
     
    Guilt, a useless emotion. Nothing to be guilty about we are all doing the best we can remember that.
  7.  
    Thank you, everyone! This is ALL so helpful!
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 11th 2018
     
    Hope everyone had a OK weekend and not starting the week feeling any guilt.