WE JUST GOT APPROVED FOR THE 10 HOURS RESPITE PER WEEK, FROM THE VA!!
The social worker just called and she was so happy for us too. So that is in the works. Along with that, and the Seroquel helping him, and myself being approved for the State Medical, things are looking up...despite the fact that Alzheimers really is crappy.
Spent a half hour on the phone with her it was great.
Ok QUESTION FOR MY NEXT STEP??? I need to apply for SSDI for him, he is now collecting SS but not disability, I had no idea he was even eligible until I saw on this site that he is. ( 63, disabled since Dec. 2010.
SHOULD I APPLY MYSELF< or get an advocate? Already having trouble with the forms on the government website.
I will do a search and read all the information I know is here.
Oh a wee bit of a happy dance, (better not spill my gin and tonic)
I think if your husband is collecting Social Security retirement he can't also collect SSDI. However, do contact the SS office, it might be to his benefit to collect SSDI instead of SS retirement and then collect retirement at age 65. But I don't know if they could make a switch retroactively.
Coco – Congrats! Things do seem to be looking up for you. The people here are correct that you can't collect SS & SSDI at the same time BUT SSDI payments are what he would have gotten had he been able to work until full retirement. How do I know, well last month I applied for SSDI for my DH. When I went to our local office & talked to one of the reps, I had to make an appointment to see someone (because it is only a small office). When I told her what I wanted & she looked up his account she said (& I quote!) “Well SSDI would only be a little more than $100 a month from what he is collecting now” (He took early SS at 62) Well DUH lady, that’s $1200 a year & that can buy a lot of groceries! (I didn't say that to her, but I wanted to!) ANYWAY, my advice to you is to RUN don't walk to your nearest SS office or better yet start the paperwork online. I've also brought the SSDI thread to the top in case you want to read it. ((HUGS) to you !
Great Coco....Yes, if you can do the paper work on-line then fine. But, call the SS office and get an appointment....you will still need to go there anyway I would think. If you get the SSD (which you should) then the great thing about it is that he will also get medicare and in your case it might be medicaid...If you do qualify for medicaid and you had to place your dh..then they will pay for placement. His SS will increase to the amount he would be getting if he is 65 instead of the 62 when he applied. Good Luck...about time someone got good news.
Thanks everyone! Bluedaze I believe you live in Florida, so you have enough sun. So I am sending you a sweet ylang ylang flower from my tree, which is blooming for the first time in 4 years! (The chanel #5 flower) Our drought ended this year and the beloved plants are my lifesaver, along with my cats..
It just takes one flower to open, and the whole yard is infused with the heady exotic scent.
I guess I may have been confused on the Social Security thing. He has collected since he turned 62, and at that time I should have applied for SSDI but not knowing he was ill. I will go slow with it all, too much to think about right now!
Now they will be contacting the agency about the schedule and the nurse. (they have to drive 2 hours to get here!) I am so in love with our social worker, she was just so joyful when she called with the news and said that it went better than she thought, she did not have to do extra paperwork. Also the home visiting nurse about once a month, which saves us the trip to town.
Now the hurdle of figuring out how to continue my little business, we still need my income. I thank God, that He has always provided and has taught us how to live on a really small cash flow. In some ways this is an advantage isn't it? We can survive on very little, yet still eat the best fresh fruits and veggies in the world, local grown coffee, and manage to pay the mortgage each month.
Can I say, that I have just a bit more faith in humanity? That despite uncaring family and fairweather "friends", there are good people out there?
My wife quit work at age 57. It took a year of proding for me to file on line for SS disabilty (that old denial thing) I filed on line without any help and It took about a year to get her first check. HOWEVER the payments are retroactive back to when the disabilty began. So we got a $30k lump sum for those two years, and now a check each month.
I understand that the lawyers who do this for you take their pay out of the lump sum . . .(?) It aint that hard, I did ALL of the application work online. We never went to a SS office. (they must have sent papers to our home? I dont remember now) The only thing we traveled to was her exam at the SS designated disabilty doctor.
The dollars per month are the same as if she had continued working to her normal SS retirement age of 66 1/2 (Remember they raised the SS retirement age 20+ years ago and for us YOAD folks retirement age aint age 65!)
If she had applied for/received the SS retirement benefit it would have been signifigantly less per month as it would have been counted as an early retirement. She is now 61, I donno if they will change the source of the funds when she reaches age 66 1/2, but the dollars per month should stay the same.
Warning: Do not delay in FILING for the SS disabilty. You must have worked 3(?) of the last 5(?) years to qualify. If I had waited another year or so she would have been denied because she had been out of work too long. I understand some recession victims who have been collecting unemployment for the past 99+ weeks (and still do not have a job) are now looking to file for disabilty to keep the checks coming.
Coco, I have thought of you several times today and each time it brought a smile to my face. It does lift us all up when something wonderful happens to "one of our own" It is a wonderful feeling when our faith in humanity is renewed isn't it ♥
Nikki well it sure is nice to know people care. You know, to repeat myself, one of the hardest things since his diagnosis is the way that family ran away and many friends became fair-weather. (not all) It is so hurtful to know that after all the years, they really don't care about me, and even him. So to have strangers so happy for us means the world.
You are such a fine example of putting your mate first, the more time goes on the more I see how important this is. He is in a good phase now with the seroquel, so much happier, still forgetful of course and he still has some agitation but NOTHING like before. Even the peeing every 5 minutes seems to be better.
So I am loving him up while I still can. Yesterday I gave him a really good hug, and stroked his head. He usually stiffens up he seems uncomfortable in his own body since getting this. But last night after the hug, he looked at me with the brightest smile and said, "That was really nice, thank you" Cherishing these moments, my soul knows, they will not last forever.
Bluedaze oh MAGNOLIAS!!!!! Oh pure joy! We have just a few southern magnolias on the island, there is one blooming at a grumpy old Portugese mans house and I have to pull over just to look at it. When he sees me he just mumbles and goes back in his rickety tin roof garage. Those flowers are HUGE like saucers, how I would love to just hold one.
Plants are my true loves in the nature kingdom, with those crazy cats running a close second.
Once again, thanks for all the kind words, you guys rock. Here is to hoping I don't have to whine for awhile..
I applied for my husband's SSDI totally online. Only saw someone in person when he met with their neurologist. He was 62 so was approved for early SS first. A couple months later he was approved for SSDI which was retroactive to the date of disability. For the months he collected SS they just gave him the difference. As stated before, the SSDI is what they would receive at full retirement. My understanding is when he turns 65 it will then be SS, SSDI.
I would do it online, then send in all the information you have along with a copy into them. I sent copies of all his medical that were related to the EOAD, just in case the doctors did not send them in. I am assuming since he was approved in 2 months (this was before it was made compassionate) was because I made a good case, they had all his medical beforehand and the doctors were quick to reply or they may have just used what I sent if some did not. I really played up how much of a liability it would be for someone to hire him when he can't remember how to do things safely, can't remember what you tell him for more than a couple minutes.
Applying for SSDI online is the way to go. You can do it in many sessions, print out what you need to do, and not have SSA start processing it until you feel the application has been completed.
The only time you need a lawyer is if your application is denied and you need to appeal your case.
Having complete medical and work records is probably a key aspect of getting approval.
We went to the office to apply for social security disability and the people were nice and gave us some good advice. My husband was turned down initially and I filed the appeal paperwork myself which was quickly approved. I figured if the first appeal was turned down then I would go to the lawyer.
I found goint to the SS office much more helpful. Questions were answered as they came up. With an appointment made on line my wait time was less than 5 minutes in the office.
Coco--Congrats on the respite! You will feel like a new woman!
I worked for SSA for 32 years. What you've been told about applying for DI benefits asap is correct. Having been an "insider" and knowing how many delays and problems could potentially crop up, I hired a consultant (not an attorney) to help. He charged me $600 and it was worth every penny--my husband was approved with no problem in a few months. However, knowing where you live, it may not be easy to find a similar person (he calls himself a vocational rehabilitation consultant).
One thing I've said here before is to follow up on everything yourself. After you apply, let your husband's doctor(s) know they will be getting a request for medical evidence from SSA. Follow up with them that it was received and sent back to SSA. Follow up with SSA to make sure it was received. Track every step yourself to help avoid mixups within the government bureaucracy. It is certainly worth the effort to file, not only financially, but for access to Medicare at a younger age. Good luck!
coco i am so happy for you! About ssdi my dh is 59 and got ssdi last year. The thing about it is you have to be on it for 24 months before you get medicare so the sooner the better. I debated buying private insurance last year because I thought "oh what can happen in two years?" His health besides having ms and mci (i don't know where the mild comes from there) was fine....plus the premiums for him were $600 a month... I decided I should do it just in case.... well as you all know this feb. he had heart failure, renal failure and atrial fib and spent 12 days in hosp. One more year to medicare and maybe there will be some $$ left in our ira or maybe not but tomorrow is another day.
FINALLY!!! Just hear from the Home Care nurses, and my 10 hours respite may start as soon as next week!! There may even be a chance that one can come really early Saturdays so I can do my market. However, I am not going to use every precious hour for work, I am going to do at least 2 Mondays a month for me, just me, shopping, beach etc.
2 thumbs up to the VA system, for this help.
Also he seems to be less pacing and sundowning today with the extra dose of Seroquel this morning. sighing with relief....
thanks! Just got a call, there is a Home inspector coming Tuesday next week, and then, the respite should start Monday May 14th I believe. That is a start and the nurse may even do a Saturday if things work out. She lives just 20 minutes from here, apparently she has worked a long time for this company and they highly recommend her.
I fully expected that the nurse would have to drive from the main town, so the fact that she lives so close will be a real bonus, IF she works out. Oh cross your fingers and toes and pray for us! I am salivating for my little time out, every week!
Of course I have not told him yet. As long as she is compassionate and loving I think he will be fine.
Oh Coco, so happy for you. Do you think he will need a little time to adjust to having someone other than you in the house taking care of him? I know that my DH would not be happy about that right now. Hope everything works out. Keep us posted.
Congrats Coco!!!! I am so happy you are going to get some alone time.It sure can help... Also glad the meds are calming again. Wish I were there so we could have a girls day out!!!!!!!!!!!!!!!!
Just cracked an ultra light beer, (figure watching), and DOING THE HAPPY DANCE....CAN YOU SEE ME?
I will of course spend a little while at home the first day. I know that Dado will not LIKE the fact that I am gone for the day, however I really believe he will be fine if she is nice. He will just hole up in his little cubbyhole, though I have insisted they get him out walking a bit each day.
Happy dance happy dance....who knew, that time was so precious, time that I used to have as much time as I wanted, and did not appreciate it. Now it is like a precious pearl.
How fast can this damn disease move anyway!!?? I have upped his seroquel and he still is agitated , today more that ever. Then, he started falling down the steps and I tried to stop him, he fell anyway, did not get hurt as far as I know but I have really wrenched my back. I tried to lay on the couch and ice it, but he was outside just getting in to everything and I could not rest. I told him to GO TAKE A REST GO LAY DOWN< and he said NO! This was the first time he has argued with me.
Of course I had a meltdown my back hurts , he broke the water faucet as he would not leave it alone, and I am almost ready to give up. Sent a note to the doctor about it yadda yadda yadda I am sure they will just so up the drugs.
really, how FAST can they get worse? It seems to be every week now.
Coco...They can get worse in a heart beat. I know the feeling. This condition is so hard to figure out and difficult to make any type of plans because you never seem to know from one day to the next...or even one hour to the next.
Hope your back feels better real soon. I asked my dh's dr. to give him a prescription for Ativan. I have taken it for years when I got really, really stressed. When my dh had a another bad spell after his trip to the ER I gave him one and the next day I only gave him a half of one pill. It seems to calm him down. When I take one when I am stressed it seems to erase whatever was bothering me....kind of like... "Who gives a s**t". It really calms me down. I also have taken one at bedtime when something was troubling me and I couldn't get to sleep for hours. I usually slept like a baby. And, it never made me feel druged or sleepy. You might want to ask your dh's dr about getting a prescription for your dh at times like this.
Coco, hope your back feels better soon..oh, I know the feeling of just about to give up. Seroquel just knocks my DH out for 12-14 hours...doesn't it make your DH sleep? I have really noticed my Dh decline down a lot more during April....everything my Dh touches he breaks... I've managed to get two weeks respite at the end of this month...so sad.
Coco--so sorry to hear what happened. If you had said to him--Honey, my back really hurts, can you come in and take care of me--would he have responded well? I know my husband would have. By telling him to rest and lay down, I know Steve would have said "you're treating me like a child"...always had to watch out for that! Hope the doctor responds quickly on the med situation. The unpredictability of this disease is the most difficult factor, I think.
most of us know this feeling of lagging one step behind the disease and its ongoing symptoms! it could be the new dose is causing a bit of issue but he should get use to it pretty soon but yes check with his dr about how to go about it. so sorry to hear you wrenched your back coco. been there done that alot over the years. you should really consider the locked keyed dead bolts on doors sweetie, it will help keep him indoors and out of trouble out of your eyesight. one more issue to have to confront. hope today is better for you both. divvi
Thanks all. Marilyn I will try that approach, though I guess he is really getting worse that I thought, he would forget that in 5 minutes. It is already starting this morning, he is up and pacing and going to the bathroom every 5 minutes for nothing. I am awaiting a response from the nurse on upping his seroquel even more, as he is one a low dose. I did start giving him more 4 days ago, in the morning and evening not just in the evening.
bluedaze* just seeing your post makes me feel loved, nothing useless about that.
Julia the seroquel does not seem to knock him out at all, but he is only taking 25 mg. I was so worried about him becoming a zombie, and now I just have to face it, that hime sleeping from drugs may be the only thing I can do. This is nuts, I am already getting tense as I hear him going in the bathroom now, every 3 minutes. (No infection, they tested him)
JudithKB you know he is the exact same age as your husband, so young. (63) I am really quite freaked out the changes that are happening so fast. My sister from Canada, (thank God for her she is my main support besides you guys), says I need to let him go, that it is not him anymore, and in so many ways that does hold me back. I do it all for HIM, thinking that he is in his last 'good" days.
Divvi, funny, my sister said that today too, that it is time to lock him in. She said lock him in his room and I said not I cannot do that. But yesterday he kept going IN and OUT, IN and out, not knowing what he was doing. And even when it was dark. Now he forgets almost every day that he has had dinner.
He is really going down isn't he?
My back is not as bad as I thought. I love you guys, I really do.
Coco--Do what Divvi suggested and call a locksmith in asap. You do not want him to wander and get lost. There are many previous posts regarding this issue and the keyed deadbolts. Steve was lost for about 4 hrs and it was the worst part of all of this, believe me.
The VA is in full swing mode now. Hope this continues. Had a call from the social worker late Friday. They are looking into all the benefits we now are entitled to. They said I am entitled to 30 days respite per year. Also, they are sending me the information regarding the facilities where he could go besides the VA hospital and the VA would pay for his stay. Also, he is entitled to day care. The problem with that is both places are not too close and they are from 8:30 to 3:00p.m.....he would be exhausted staying one place like that for that long. He is so use to sleeping at least 16 hours a day or more.
Today a nice gal came from the Visiting Nurses Assoc.& Hospice. She has ordered a new shower head so I can shower him, grab bars for the bathroom toilet area and the shower, a walker and a wheel chair. I told her he didn't need the walker and/or the wheel chair yet. She told me...take them now...because if I wait it could take weeks to get them when I need them. Also, she is going to try and get me morning care for him at least a couple days a week. I would have to be home during the time these people came..but, they would fix him breakfast and lunch and take him for a walk. And, she is going to place him on hospice care and someone is going to come and prepare his medications for him because he takes 12 pills a day and they will prepare that for him for weeks at a time so I don't have to do it. This gal said there is a lot of help and people just don't know where to get it...she is coming back on Friday and review the various things I can get and coordinate it with the VA.
I am going to take all I can get, because I know I am getting to the end of my rope. I am so depressed and so tired I don't know what to do. Yesterday morning he came out of the bedroom at 6:00 a.m. (never gets up before 11:00) He was in his shorts and T-shirt and went to the door that opens into the garage. I stopped him and asked him where he thought he was going. He said he didn't know. I told him to go back to bed and and he did. Now, he doesn't remember a thing about that. I think he thought someone was in the garage stealing his things again. Oh...well....guess it is time for me to get the locksmith out here to do the doors.
JudithKB, I have a question & forgive me for asking because I know that you must have mentioned it on another thread, but did your DH retire from the military? If he didn't does he have any medical conditions that they say are military related & if so what are they. I applied for disability for my DH because I was told that his diabetes would qualify him, but so far I haven't heard anything.
No my dh is not retired military. My dh got his disability payments and medical qualifications from the VA because he was exposed to Agent Orange and he has had a heart attack and two stents as well as passing the tests given by the VA which qaualifies him for these benefits. You need to get a good VSO officer to help you with your claim. They know all the ins and outs. Call your local VFW and they will give you the information you need. Or you can probably find out who your VSO officer is on the computer. Also you might want to go to Military.com and that is a great web site to get a lot of info and you can even ask questions and they will answer them. I have seen people talking about diabetes on that web site, but I didn't pay much attention because my dh doesn't have that problem. I think VSO means Veteran Service Officer...but not sure.