I haven't written in a while, but I get so much comfort from reading others' posts. Last night was one of those "Oh my God, it's worse than I realized" moments. I was talking to DH about how much he has in assets and where it is. We've been married almost 10 years, but he would never really tell me how much he has or how to access it. Now, I'm left to pay the bills and prepare for the future for us and our kids, and I'm pretty much in the dark. I have to go with him this year to get our taxes done, and I'm going to have to explain this situation to the tax man, whom I've never met. To me, it's embarrassing and frustrating. Here I am his wife, but I've no idea how much we have or how to access it. So I'm trying to calmly discuss this with DH and he says the assets are in a "box". I'm thinking, ok, there must be papers in a box explaining all this. He leads me upstairs, then down to the basement and finally pulls out a small metal box that he says is valuable (I guess it's antique, I don't know.) That's his "asset", I guess. I suddenly realized how bad this is. I started feeling angry. Why couldn't he let me in on this years ago or even a year ago. arrrgggh!
I went to a day program center yesterday to follow up and see if they got my application. I have to go back to work in a couple of weeks to maintain insurance and keep from going completely under financially. I don't know what I expected. I was only there a minute (the director is on vacation it turns out). But after I left, I broke down in tears. There were people sitting in a group and they seemed so elderly. (No offense to those who are older, but DH is only 54.) I kept thinking, he doesn't belong there. I thought of how vital and full of life he was when I met him 11 years ago. Nothing like he is now. I cried on the way home. I'm sure there are younger people there, or if not, somewhere else, but I was just struck by the fact that DH has changed so much. He is only 54, but he looks and acts at least 74.
Anyways, sorry for the long rant. I need to maintain hope. DH is participating in a vaccine trial. He got his first injection on Wednesday. Maybe it will help if he isn't getting the placebo. It's hard not knowing.
Lately, I'm ashamed to say that I think a lot about what things would be like if this disease had never happened to DH. I keep thinking there's no way we'd still be together. When he was well, we argued a lot, about finances, the kids; several times I was ready to split up. Now we rarely really argue. The disease certainly has mellowed him in some ways, but it's not the way it should be. I need to stop thinking about the past and just get on with things. Do any of you think about "what if" like that? Just wondering.
I just checked in for a minute after my walk, and will write more later, but I wanted to let you know that you are NOT alone in your thoughts and feelings. Go to the top of this page; click "search", and fill in the "topic" circle. Write "unhappy marriage", and hit "search". It will take you to the discussion on that topic that we had about 3 months ago. Also, if you go to the left side of my website front page, click on "previous blogs". Scroll down to the October blogs, and there is one there about Alzeimer's Disease and the unhappy marriage.
I went to the trouble of getting guardianship of my wife, so there is not any chance of my being denied access or information. It was not fast nor cheap, but I think it was a good idea.
My DH is 56 and I feel the same way about the daycare situation. Early on when he could still drive he went there to volunteer. But as he got worse he realized he was one of them and does not want to go anymore. There are no other EOAD patients there. He prefers to stay home and listen to music and play the piano. Fortunately I am able to work from home. He will be starting with the vaccine trial next month. Keep us posted about your results. We already have been through a trial for Flurizan but we think he had the placebo. They still can't tell us but he declined over the 18 months so we assume it was the placebo. He can now take the real medicine and I have not noticed any improvement for the one month. If we do the vaccine trial he will have to discontinue the Flurizan. And of course he has a 50/50 chance of getting a placebo again. Sometimes I think why bother?
I find myself thinking about a life after this is all over. Will it be 5 years, 10 years......? I think "what if?" all the time.
I know everyone reacts differently to medications, but we have a friend who is in the Flurizan trial, and it has been like a miracle for him. He "woke up" and is doing most of what he did before. BUT it wasn't instantaneous. He was on it for almost 6 months before a change was noticed. We know someone else who is on it, and she has gone downhill, so we're thinking she's on the placebo, or if it is the Flourizan, it's not working for her.
Maybe we should give the Flurizan 6 months before we go to the vaccine trial. MY DH has been complaining about stomach upset and I think it could be the Flurizan. Anyone else tired of all the decision making?
Kelly, I love my wife deeply, and I will do “what it takes” to see her through this terrible journey, but I don’t think any of us would be human if we didn’t think of the “what-if’s”. Fortunately, I had the ability to retire at an early age and we traveled extensively and I have those memories to hold on to. My next great adventure was to buy a home in Florida where we could spend four or five months in the cold weather and then return to Michigan for the balance of the year. With my wife’s illness I don’t see that happening, so my after AD “what-if” is to think about pursuing my dream on my own after she is gone. So sad………… DickS
Kelly, I can't address your feelings about EOAD our is LOAD, but I am young, or so I think.
I worked in a bank, I saw the new widow's with no idea how to handle money. I said, "that will not be me". I started to learn about money and investing. I had most of the responsibility, but we shared it. He did the taxes for years. I decided I needed to learn that too. At first we did them together with tax software. Then it was easier for me to do them by myself. Software has come along way over the years! The past tax returns will give you a lot of information. Start digging, and learning.
What if's, this AD had never happened. I guess I think about it, but I don't go there often. I have always been a dreamer so I have dreams about life after AD. He married me because, "I was a gutsy woman". I hope I will not be too old to follow my dreams. If you see a mad woman going down the road with a little white dog in motorhome, It is me! Well we have to have our dreams.
We had dreamed of moving to Florida for 20 years. It was a series of weird circumstances that finally allowed us to make the move - as everyone knows from my writings, Sid was misdiagnosed up North, so it was a blessing that we moved here and found a fantastic doctor. Florida is known for having the best services and facilities for seniors, with or without Alzheimer's Disease. (And no, not everyone in the Sunshine State is over 65, as my son seems to think. My best friend is a pediatrician, and she has plenty of business.)
I hope that you are able to make the move down here someday - even part time. The quality of life is so different from up in Boston, where there was 9 months of ice, snow, and freezing cold; 2 months of heat and humidity; and one nice month - September. Down here we're always able to be outside in the sunshine (well, except during a hurricane, but fingers crossed, we haven't had one since we've been here), and everyone is extremely social - lots of outdoor events; lots to do. I am so grateful we were able to get down here before Sid's disease advanced.
Keep the good memories and never let your dreams die.
Kelly, I volunteer with the AARP Foundation and prepare income tax returns for seniors (typically 50 and older)and people with low income. To my knowledge, AARP offers this service in all states. It is FREE and the returns are filed electronically for speedy refunds. If you take advantage of this service it is one less thing you need to worry about. You can find more information on the AARP web site. DickS
Dick ...... I too was able to retire early and fortunatly able to have a winter home in Florida ( real home Wisconsin ).... We also traveled a few years in a motorhome.... Dee seams to have a bit of difficuty with the moves back and forth and I believe there will come a time that I'm not going to be able to continue the seasonal changes.. ( this years is better because of anti-deprecent) .. My before AD life adventures was riding my motorcycle all over north & central America.. ( Dee rode with till about the time her AD began 6-8 yrs ago )... My dream was to ride from Alaska to Terr Delfuiago Arjentina (spelling)... During the time of her early AD I was able to ride from Alaska to central Mexico but ran out of time as this (AD) terrible journey progressed... Then the blow of 06 when she was diagnosed, My whole world was crushed and as with all of us away goes all the plans with our loved ones... I gave up, told all my friends ,, my personal dream will never be fullfilled........well, this site and other means of coping have helped me greatly restore my goals and God willing that I live long enough I will finish central and south america .. So that's my after AD "what-if..........As joan said..."never let your dreams die............ I'll do it with the memory of Dee as she was ( cause I know she'd want me too) and if I'm to old , I'll get a side car bike damn-it.......... DanDee
Terra del Fuego (sorry Dan...I'm just a geek, I had to!) It means earth of fire. Before Jeff and I married we had both been backpackers, but not since children. So we were going to hike the Continental Divide Trail. It's like the Appalachian, but not as heavily trod, and runs through the mountains from Northern Montana to the southernmost bit of New Mexico. So in recent years I've been giving more consideration to buying a teardrop trailer and just taking off across the country, rather than relying so much on our backs. I cannot predict whether that's a likely thing since it will be several years before our youngest is out of high school. (and reassuringly launched on a college path.)
Geesh, but hiking in the wilderness without keeping a very close eye is certainly out! My 15 yo son and I went in Shenandoah Caverns with Jeff last summer, on a drive through Virginia, and we got a couple rooms (cavern rooms, you know) along on the return leg of the tour and realized--no Jeff. The tour guide girl and I had to leave our group, go back a ways, and find him where he'd followed the wrong group. I have learned, since then, to keep a better watch. It's especially tricky when we merge with other people...he clearly can't quickly determine whom to follow.
I had a silly thought the other day. (Well, it struck ME as silly...) My dad has never been a BRAVE traveler because he feels anxiety where English is not the language, or navigating your way is just very different. (for this reason, when I was young, the few times we went abroad it was on a planned tour.) He and my mom have done some really wonderful trips, and on a quieter scale, taken a couple Mississippi Queen cruises. My dad REALLY liked the Miss. Queen. Quiet, safe, predictable. A little boring to my mom though. So I'm not knocking a Miss. Queen cruise--I'm sure it would be pleasant, but suddenly the thought popped into my head that I should take Jeff on the Mississippi Queen, and I had to laugh at myself, because that would never be a trip that would have occurred to me pre-AD. Now I'm thinking--what's quiet? What's not too visually stimulating? New York City with it's traffic and subways--I love it, but I found that it addled Jeff a bit on our last couple weekends away there.
But it's ok. If we even get a chance to travel, I will not mind selecting quieter destinations for now, and saving the rowdier ones for when I'm on my own.
Emily......... Yes, trying to travel with an AD person has its challenges.. I would be in favor of those challenges but Dee is not. Last Feb. my mother and brother were here in Florida to visit and I thought a 4 day cruise would be great as both had never been on a cruise, Dee and I have been on a number of them, the last was in 05... Anyway the afternoon before the cruise was to leave she said she did'nt want to go so I was very hurt because my mom is 75 and not getting any younger... The next day I drove my mom and brother to the dock and saw them off ( one of the sadest days of this AD ) .. Also a waste of $800........ So, all our friend know that even if we have a plan to do something, we may be a no show at the last minute ( fortunetly they understand )...................... Dan
At one time I thought a bus tour of the heartland (we're in Los Angeles) would be safe because he was on the bus. One day I lost him in a giant train station in Savannah. He'd gone to the men's room w/other men, but it was closed for cleaning and they all went to another bathroom but he eventually wandered off. Also lost him at Fort McHenry in MD, I thought he was right next to me, that I was talking to him. I know I couldn't put a leash on him, but I know you can't watch them close enough, just like a child. But I enjoyed the tour immenssely, looking at another way of life in my own country.
We also did the Miss Queen on the upper Miss. Mark Twain country, etc. I did not find it boring and I think he liked it, and yes, I like the quiet life. Altho I love NY & other big cities, but the burbs are more comfortable day to day for me. Just an ol' foggie!
My last plane travel was with AD husband and my youngest kid Gabe, 15, who is somewhat differently-abled himself in terms of attention and common sense. So it was an interesting thing to send the 2 of them off to the men's room, pre-flight, not quite knowing which one to put in charge of keeping tabs on the other. Fortunately the bathrooms were not far down the terminal corridor, and I found Jeff as he was trying to figure out which gate I was waiting at, and then I found Gabe, a few 100 yards farther away, walking backwards on the moving walkway. Typical.
Emily, my LO and I have always been tent campers but last spring (11 years since diagnosis of AD) we decided to buy a teardrop since LO also has bone cancer. After much research, we ended up buying a Scamp. It's called a 13-foot trailer but 3 of that is in the hitch so it's tiny and easy to pull with my Honda CRV. It has a double bed, two-burner stove, fridge, sink, furnace, and a full-size flush toilet. We love it. LO has wandered a couple of times but the other campers are very helpful when they know the situation.
And to Kelly-- I understand what you mean about the day care. My LO's oncologist has contacted Hospice for us as LO is thought to be late-stage cancer. Today we took a tour of Hospice House (which we would use only for respite care) and I was taken aback that everyone there seemed to be 100 years old. I'm afraid LO will not be comfortable there. We are fortunate that he still looks great and is conversational even after all these years.
Just wanted to address your concerns about assets and fincances. I an a CPA, have been for over 35 years. One of the things I take pride in, is helping people (spouses, usually) find the assets that they were never privvy to.
I would contact by mail or email, as this is becoming the very busy time of year, your tax person and explain briefly your situation and your lack of knowledge of the assets. The tax return has listed the interest and dividends from the assets, wihich will tell you some of the accounts. If the tax person keeps photocopies of the year end documents, that can tell you names, acct numbers, etc.
Perhaps the tax person can help find some of these things out for you, by asking the right questions of your husband, when you are at the tax appt.
This doesn't take care of the non income items, like deferred annuities or retirement or insurance policies. Also, if there are insurance policies, find out now. Who are the beneficiaries?? Could be another spouse? or ?? Insurance companies MUST disperse the proceeds to whoever is the beneficiary on the policy.
Did you think of a safety deposit box? at the bank?
Most importantly, be bold about finding out the things that you need to know about your money (both of yours).
Hope some of this will help. Here I go again, trying to help, but it feels good.
Dear Kathy: Don't ever stop trying to help. I handled the finances in our family, but I personally know of several women who were left penniless widows and never found their assets.
Thanks so much for your feedback and advice. Kathyb, I will definitely try to get all the information I can from the accountant when we meet with him next week. I just resent having to go through all this hunting and "investigating" now, when everything is so tough, but I suppose if this hadn't happened, we would have gone on with DH taking care of the finances. I've learned a lot and become more self-sufficient through all this. I recently learned how to use a power drill, something I never thought I'd do!! (I've always been such a "girly girl". Now I'm discovering a whole other side of myself I didn't really know was there!
Check out the Message Board topic, "What have you done, that you never thought you could. " It is on page 4 of these Message Boards. Your power drill skills fit right in with that topic. Good for you!!
Kelly5000..........What you say you've experienced (in the financial end and with a rocky marriage) I could have written! My husband (john is 78, I'm 53) was a physician, seemed always to provide for us very well. In short, we've been married 24 years, have 6 children between us (his, mine and ours) and from the beginning, I was always told that his finances were none of my business. He had always given me an allowance to pay the household expenses. He was always very generous with relatives, children, we had the best of everything, especially when he was in practice in Florida. I just naturally believed he was on top of things financially, a good and thoughtful planner. Fact is....seems he's always lived on the edge of his income (at one point over 500k), never made any plans for the future (not even for our children's educations!...fortunately at the time they went to school, he had the cash!). There are no insurance policies. There is a very small IRA. I found a small annuity that I need to cash in and do something with. I am having trouble paying the bills (we have a small farm now) and I have no career to fall back on. Because he hasn't wanted help with taxes and insisted on doing them on one of those CD kits, the IRS has recently audited us from 2002 to 2006. They forgave some of the penalties becausse of his AD, but I OWE thousands I don't know how to repay. My parents helped me retain an attorney specializing in Elder Law and Estate Planning. The plan has become a way to protect myself and prequalify him for medicaide. I feel like a crook. I gave my life to him and our children. He actually told me in the past (why didn't I leave?) when I tried to talk with him about it that my insurance was my youth, beauty and "this house" (the huge mausoleum we once lived in in Orlando, Florida). His idea was that I would just find another man. Like I'm cattle for sale. God, I don't know why, but I loved that man. It was his energy, his intellegence, sex drive, and yes, maybe the "power" job and being taken care of so well. I never loved him for his money, though. When I fell in love with him, he presented himself as a very plain living person, a family guy, so loving. Never knew he would be so controlling. Dr. Jekyl and Mr. Hyde. Looking back, I believe John has always had very low self-esteem...not believing anyone could love him for anything except his income ability. I'm wife number 3...the one that wouldn't leave or be put out. I stayed , planned to leave several times, stayed and thought it would always get better. Some people wonder why women stay with a partner even though the relationship is so unhappy? I honestly did it for my children. His children had seen so much strife and witnessed that when you're unhappy with a situation, you simply change...change the spouse, change the job, change where you live. I wanted to show them it's possible to live a commitment. What a joke. They hate me for it. No, wasn't trying to be a martyr....just wanted to be a good example of a mate. Stick to it, try harder. Now, I'm a caregiver that doesn't care to give any care. I need care. I know I'm in trouble here and I'm trying to get some help. These message boards have helped me survive the last couple of days. What DOES eventually happen when AD issues into the lives of an already unhappy couple?? Can anyone respond to that hard one?