My husband was diagnosed this August at the age of 57. I am 56. I thought he had a stroke or something because he was unable to do bills, write an address, make change, etc. Nothing showed up on all the tests. I accompanied him to a neurologist and sat with him while the doctor did a cognitive evaluation. I came out of the office shaking like a leaf. I felt so incredibly bad for my husband. He was a 100 times worse than I thought. It was horrible to watch him try to answer questions and do drawings. I didn't realize that he didn't know what year it is! I have read every inch of this website and watched every video. Although it is very helpful I am so upset afterwards. I just cry. I'm scared for what's to come. I know to take one day at a time but I get upset when I see a new change in him. We had so many plans for our retirement. Here I go again. I'm crying writing this. I think this is the beginning of my acceptance stage. God bless all of you.
Mag it is so hard to realize you and your husband will never have the retirement you had hoped for. Every day is another little death. At least here we all understand what you are going through and will be here to lend a shoulder to cry on or a hand to hold.
Mag, This trip started for me this past Feb. I to was so scared. Is your husband still working? If not get started on his SS disability. It takes time for it to get started so the sooner you get on that the better. Take a long look at all you bill, what you owe and how much money you have. Keep in mind not to do anything rash. Take over all bill paying and banking. I have put a note on our checking and savings that my DH can not do or change anything. Get a power of attorney. Cry, and cry some more, than plan, make plan A,B, and C.
I am 51 my DH is 59, we have a 14 year old still at home. Do you have children?
Mag: I have gained strength by trying to compare this condition to other conditions. Example: My dh doesn' t have cancer with terrible pain. My dh doesn't have missing limbs from an auto or other accident. My dh's awareness will become less and less and he is not going to know what his problem really is or most anything of any importance. Then I say to myself...which condition would I rather have? Of course we don't want any serious illness for ourselves or our loved ones...but, sometimes life is difficult. My dh is 63 and we too planned on a great retirement. As bad as he is we still enjoy many things and I am planning as many trips as I can for this coming year because I do believe he won't be able to travel much longer.
Mag said: "I'm scared for what's to come. I know to take one day at a time but I get upset when I see a new change in him. We had so many plans for our retirement."
Although my wife and I are older than you, I fully understand your feelings. The site manager of the Adult Day Care center my wife attends calls it "GRIP - Grief on the Installment Plan". Keep posting. You will get lots of support here.
Blue asked if I had children. I have a son living at home who is in his senior year at college. He is concerned that he may have the gene. I told him when he is ready he can get tested. We know of no other family members who had dementia. Dh had to turn in his drivers license because he didn't pass the drivers evaluation test. We applied for SS Disability but denied. I appealed. Dh was self employed. I never had anything to do with the business but now I'm tryinig to close it and I don't know what I'm doing. I'm learning as I go.
Mag, you will be astonished at how much you will learn and how much you will be able to do. There's a whole lot more inside that head and heart of yours than you can imagine. I'm so sorry you and your DH are going through this--also your dear son A(it's so scarey for them). are you a woman of faith? Try and rely on your faith and stay on this site. You will find a lot of help here.
Mag, that is so true, you will be able to do things that you didn't think you would be able too. This is a place that you can come to and the spouses will understand and not judge what you are going through. No one else can do that for the most part. For example, This week I had surgeory and my DH wasn't there but a girl friend and her husband were. The husband told his wife "Her husband should be doing this instead of us" Under normal circumstances he would have but these are not normal circumstances. Everyone thinks that wives do thus and so in a relationship and husbands do thus and so and that is just the way it is. Well, in all of our cases that is not the way it is. This is not "normal". Our "normal is changing constantly and this support group is the only place pretty much that you can go to where we all understand the ABSENCE of normal.
At age 54, I found out that my wife had it. I think you go into shock. You do not want to make long term decision at that stage. I think it will take a year or more to accept the life changes you face. I made the decision to quit my job at the time and spend as much time with her while she was at her best. I did not forsee the economy tanking and not being able to find suitable employment later. I might have made a different decision if I knew then what I know now. We did spend several years doing her bucket list. Now she just wants to stay home and feel secure in a place that is familar to her. You have found the best support site on the web for what you are going thru now and the decision you will have to make in the future. Please post your questions and take advantage of the the many couples that have gone thru what you face now. Best wishes
Reapply for SS Disability. They seem to always deny the first time around. Get a lawyer (or Phranque) to help you. He took documentaion ....reams of it ... with spread sheets and charts...and won after being denied earlier.
Lawyers are trained to say the right words and NOT say the wrong words.
I'm so sorry. We lived with the disease almost 10 years. Carpe Diem.
Mag....appeal your ssi disability again. You do not need to get an attorney who will take a large %% of your check. Gather documents, letters from doctors, reports, and spend time preparing for the hearing. Get a hearing (or teleconference hearing), and appeal and appeal. Our claim was delayed for 2 years, until I sent a letter to Michael Astrue (social security director) at his home address in Ma, and things started to roll at that point. We won the appeal, and the benefits were retroactive to 2004. That was over 6 years of disability benefits, and an instant medicare approval with medicare benefits. I can offer lots of advice if you need it. Social Security Disability 2/16/2010
Early-Onset Alzheimer's Disease Added to SSA Disability Fast Track Program
Social Security disability benefits can take years to receive, but if your medical condition is on the list of those that qualify for Compassionate Allowances, your application has a better chance of being processed more quickly.
The Alzheimer's Association reports that early-onset/younger onset Alzheimer's has been recently added to the SSA's list of Compassionate Allowances, a program which expedites disability claims for those who suffer from certain conditions.
The majority of Social Security disability benefits applicants wait for more than a year to hear back from the SSA, but those affected by a condition on the list of Compassionate Allowances can expect a shorter wait. In fact, you may be able to expect an answer within weeks.
The Alzheimer's Association was instrumental in persuading the SSA to add early-onset Alzheimer's disease to list of allowances, arguing that this medical condition often progresses very quickly, and many applicants with Alzheimer's are initially denied benefits only to be accepted once they appeal. Therefore, those who suffer from Alzheimer's typically have to wait longer than a year to receive their rightful benefits, all while their condition deteriorates.
If you or a loved one is suffering from early-onset Alzheimer's or a similarly swift-moving disease, you don't have the option of waiting months, or even years, to get the financial support that you need from disability benefits. An experienced disability attorney may be able to help you achieve a shorter waiting period.
We got our SS disability the first time around. But I had reports from 3 different doctors. And my DH boss sent in a report on what they were seeing at his job. Get reports from anyone your husband has worked with who could see a change.
Ask for help if you need it. From family, friends and neighbors. Don't go this alone. Get in place who to call for help. I had always had my DH for help around the house and if I was out and had car trouble. One of the first things I did was email all my single friends and ask how they did it all. One thing I learned was to have the name of a tow truck driver. Well a week before Thanksgiving my car broke down, I called the man who my mechanic liked and had my car towed. First time ever for me to do that! And yes I did cry when I got home.
Don't look to far ahead all the time. Some days just look at that day.
Ask anything, someone here will be able to help. You are not alone.
Blue, the tow truck driver phone # is good advice! First time I broke down - didn't know a tow truck driver, so called my auto insurance agent who called one for me - and now I keep his # in my cell phone.
Mag---Getting back to basics. Learn all you can about your husband's Diagnosis (Dx). The more you know, the less scary it becomes. Kind of like "know your enemy." Get all your financial matters and legal documents in order--including Power of Attorney, wills, and medical directives. But equally important, starting right now, start taking care of yourself. Claim respite time--to do thing for yourself--shopping, out forlunh with friends, a movie, a class, whatever. This is not being selfish; it's survival. To rephrase a cliche, instructions in case of airline emergency: "Put your air mask on first. Then help others. You can't help anyone if you're passed out." Also, seek out and accept any and all help. You now have all your old responsibilities, all your DH's responsibilities, and all the resonsibilities of his care. No one can do all of it alone. Make a list of things needing doing, and if someone says, "Let me know if I can help", ask them to pick something. There are many things only you can do. Anyone can do dishes, run laundry, grocery shop fo your list. Your job is not to do everything for your spouse; your job is to see that it all gets done. Keep in mind that one of the greatest gifts we can give someone is to allow them the pleasure of giving. Tell them "Thank you." appreciatively. Above all refuse to feel guilt for any thing--not getting something done, losing your cool, making any kind of error. At the end of the day know you've done your best and that is GOOD ENOUGH. You'll start fresh tomorrow.
Read all the links Joan has posted too. Check out the advice regarding the help from eldercare attorney. They can help sort out power of attorney, durable power of attorney and advance directives as well ways to protect your assets. The first weeks and months of coping with the news and all the changes and additional responsibilities we now shoulder is overwhelming and this is the place that props us up and gives us strength. you are not alone here.
Mag - did you include copies of all medical test, evaluations and visits with the application? I think it was and heard elsewhere to not depend on doctors to send it in. Often they do not reply with the reports in a timely manner and that can cause a denial. I was fortunate that my husband was approved in 3 months. He was approved and retroactive back 9 months. I am 58 and my hb is 63. 7 years ago there were signs but I ignored them due to family history until 2008. when I sent in his application there were copies of every doctor appointment and medical test performed relating to the AD. I also pointed out and kept repeating the question: who would want to hire or take on the liability of someone that can not remember what he is to do or how to do something safely?"
As for you son, he needs to relax. If there is no family history, the chances that he carries a gene is slim. My hb comes from a family history: grandmother, 3 aunts and his dad, his younger sister and him and his younger brother is showing signs. If we had the 700 we would do genetic testing on my husband. His nieces are scared to death for them selves and their children. Fortunately for us we have no biological children to be concerned for. And, our neurologist said there is only one gene worth checking for which I think is the presenile3 or something like that.
And I think we all can say we were scared when we found out, on the journey, and when it is over. Some of us are able to 'stuff' it or not let it affect us much; others are like you where the shock is overwhelming. Just know you will make it through and remember we are here for you.
We had dreamed of traveling and workamping. We started it in 2005 but only had 3 years. We did go south for the winter (Yuma) because it was always a dream to be snowbirds and do the big RV and Flea Market in Quartzsite, AZ. Not knowing how much longer he can travel (he still drives) it was 'now or never'.
Mag, just so you know. You don't have to worry about the cost of the lawyer. Social Security has it fixed so the lawyer gets either 25% or $5,100.00 which ever is less. And it comes from Social Security to the lawyer. You shouldn't have to come up with any money for the lawyer. It was a concern for me when I got a lawyer to help me with the reconsideration but when I went to talk to the lawyer he told me not to worry about the money it was taken care of with Social Security and if I got nothing then he would also get nothing.
Mag, remind your son that even if he has the ApoE4 gene, he isn't doomed to come down with AD. He could live 90 years without a single sign. Also, no one should go through life thinking we know what will cause the end of our life. That, alone, would make us crazy. Some would never ride in automobiles, others would never fly, some wouldn't cross a street.
My DH's doctor STRONGLY URGED his son not to have the DNA test done. Her reasoning was that we can never be certain how secure the labs' computer records are, and...if he DID test positive - and the computer records were infiltrated, it could affect a lifetime of applications for health and life insurance policies,, future employments and countless other opportunities in the future. She said there was absolutely NO REASON to have the tests until there were other positive signs that he might have a problem.
If our most highly secured, top secret govement records and correspondence can get into the wrong hands, consider how easy it would be for some small laboratory's records to end up on the world wide web - accessible to anyone who googled a name.