I keep thinking about this question. I know for certain that it began for us shortly before my partner lost her job. I am certain now, and I think I was certain then, that I knew something was wrong when my partner spoke to me about adding an additional step to her daily work routine. I listened to her closely and followed her description of her new procedures. There was nothing wrong, that I could see, with how she was now doing things. But I could not, for the life of me, see the need for this additional added step. I believe now what was happening was that she was beginning to sense that something was wrong cognitively inside her, and she felt compelled to double check, triple check everything she did. It was shortly after this that her employer began the needed paper trail to dismiss their 20 year employee.
But I ask myself, were there clues before that? What were they? There were a couple of “explainable” car accidents that in reality could have happened to anybody. But are there events or worries that I had then but I’ve forgotten completely about now?
The reason I keep thinking about this is that immediately after her “enforced retirement” (so much easier to say than firing), in addition to applying for unemployment benefits we also began investigating Social Security Disability due to cognitive impairments. So something that was noticeable must have also been occurring at home. Darned if I can remember it now, though.
The intersection from living the life we had anticipated living together to taking a forced turn onto the new road called dementia did begin for us when she lost her job. At that point everything began to change, although in the beginning we still had good times.
Good morning Lindylou. I have been wondering the same thing lately. I have been updating my estate plan and trying to write a letter to his sons. Years ago he boxed up their pictures and sent them a box telling them he would have no further contact with them. After that he kept bugging me to write wills to make sure they wouldnt get any of his money. I have no way to comprehend this. After about 15 years of having children in my home every summer, toilet training the youngest one three years in a row, they are finally adults we could have fun with and DH decides to eliminate them from our lives!?! WTF? When his oldest called to tell him he had a grandson he refused to take the call. Now I find myself wondering if that was AD. Perhaps he was searching for a cause of his angst. We had retired. We were helping his father learn to cook and care for his mother. I don't remember what year that was.
I remember it was spring of 2006 Lisa's mother had a major stoke, she was very close to her parents, so when she started to show signs we thought it was from worry and stress. She was still working and was having trouble putting deals together. In hindsight it wasen't stress it was the first visible signs. Then she started having trouble reconciling our credit card bills something she always did. Took us until May of 2012 to finally get the diagnosis.
When did it start well I read in a couple of threads cannot remember which ones where the question was asked about out of character behaviour years before any recognizable signs. I certainly noticed this in our relationship she is a very loving giving person but sometimes her behaviour was just bizarre just so out of character. I would just shake my head and think where did that come from there was no reasoning or logic. I often wonder if it wasen't Alzheimer's just popping it's head up.
Lindylu, I have often thought the same. I became aware after DW had a TIA and then started having simple partial seizures. They came around every 5 weeks or so and that is when I started to notice memory lapses. That was in 2009. Now, I wonder if there were signs before that. I think wolf is right. When it finally became apparent too us. Who would anticipate this AD happening to our loved one?
I know my DH and I had so many disagreements! He said he couldn’t remember doing some things. And I knew he did them. I thought he had to be lying! Then he actually forgot to watch some St Louis Cardinal ballgames! That had never happened in thirty some odd yrs. He couldn’t do checkbook or bills without lots of complaints , then he forgot about an account that he had 5000 dollars in! I knew he had Alz! I’m a nurse, I saw it a lot! I started taking him to doctors! Two yrs later he finally got diagnosed! He was still making a 100 on all the tests ! The doctor just listened to me and said now David. I don’t think your wife would keep bringing you to me if you weren’t really sick!! My husband never admitted he had it! He never discussed it. So I went along ! I miss him so!
Me and my husband have been married for 9 years and I first starting noticing a difference in him about 4 years ago, with an official diagnosis coming in November 2016. I fought for what seemed like forever with his PCP because he scored too high on their "test" for them to see that anything was wrong. Finally, after a couple of years of continuing to tell them that this was not my husband, here we are.
I suppose the first things I noticed was he started to give up all his hobbies that he had always loved. He stopped talking much which was very uncharacteristic for him. He stopped handling any of the finances and cooking, and eventually driving (which he seemed okay with until the doctor officially said he could not drive anymore). He stopped paying attention to anything or anyone other than the TV.
For the first 3 years, I cried ALOT and just could not wrap my head around what was happening to this man I loved more than anything. After the official diagnosis. I think I went through the stages of grief - anger, denial, sadness, etc.
Now, I hate myself sometimes for feeling how I do, but I finally had to just accept that my husband (the man I married and loved) was gone and was never coming back. I feel obligated (till death do us part) to care for this shell of a man that remains, although I must say it is hard at times to stay.
Hi Easttexas, My heart goes out to you. Such a young age to be dealing with the hell of Alzheimer's. And I think it makes a big difference that you were married for such a short time before the disease moved in. I was 59 when my husband was diagnosed but we had been together for 18 years and married for 16, so I was not tempted to look back. Whatever anyone's circumstances are, though, it is extremely difficult. Like you, I just broke down after the official diagnosis and was a basket case for a long time. My husband died this March and as I look back on the past 10 years, I can hardly believe the nightmare we lived through. You will get through this and we'll be here to help you. Hang in there!
Hi Myrtle - Thank You. I have found a lot of very useful information on this website, mostly from just reading previous entries. I think I have found that almost practically all of the things going on in my life right now have been discussed here. In a way, it makes me feel better that as "abnormal" as things may seem that they are indeed "normal" for this horrible disease, if that even makes sense. I appreciate your words of encouragement - God knows I need them right now. I'm sorry to hear of your husband's passing.
I look forward to getting to know some of you better.
Hi EastTexas, because of this disease we had to move from a nice little ranch in east Texas to Hobbs, NM to be near family. My DW was about 66 when this ordel started. Now, also terminal cancer. You wonder, what's next. This trip is hard. Read the thoughts onthis site. It is not magic but, better info than any where. else. Hang on there Lady.
Thanks Rodstar43. This site has already proven itself to be a huge help. My husband was around 66 or 67 when this started and I was around 40. This has by far been the hardest thing I have ever done.
So many of the things I read here are comparable to what we are going through. I was aware of his memory loss and when he got confused, he lost the ability to think through it. He got lost downtown on an errand, even though he was within a block of where he was going; he had driven in circles for about an hour before calling me and asking for help. Thanks to cell phones I could give him turn by turn directions. Being familiar with AD I recognized the little things that raised a red flag. As many of you have said, now at this time in our lives our dream has gone and I'm not sure how we'll handle things as it gets worse. We are doing OK but he is bigger and stronger than me, I'm not sure how long I can continue. Like Rodster43, I developed a very painful medical condition, that prevents me from being able to move him or do the heavy work.
We dreamed of moving back to the country and having horses again. We had to sell our farm and animals when he had cancer and we needed to be in town. But we kept looking and one day I found 20 acres of horse property, with a beautiful barn with very nice living quarters on the second floor. Our plan was to live upstairs for a year while we remodeled the front half of the downstairs. With a few weeks, I could no longer get up the stairs and we had a terrible time. For a year DH took care of everything around the house and took care of me. It wasn't perfect, and I could still handle the bills etc. After surgery I was able to get around better and we thought things would be OK. But - here is the reason for this long post. We spent way too much money getting the downstairs livable in a very short time - and have spent a lot more this last year getting it finished, and still a lot to do. We now have 2500' finished living area and 1000' horse barn which could easily be turned into more bedrooms, exercise rooms etc. But it is a barn, a 3500' horse barn. We love it, I loved having the horses stalled at the back of our house. The good part is It's beautiful property and we love it here, the bad part is most of our money is in this place. I call it the Money Pit! The one ALF I checked into would have cost slightly more than we make every month for both of us. We're in that middle ground where we make too much money to qualify for anything low income but not enough to be able to pay for everything. So our dream has now become an albatross. We are planning to meet with an attorney soon too draw up new wills/trust POA and whatever else we need. I have always taken care of our finances and am beginning to feel so panicky some days it makes me physically sick. Our kids are all on the west coast, no family close and our best friends have already passed. The last few years as DH became more confused about things he doesn't want to go out nor have people in. I think he would be happy if he never had to do anything except sit in front of the TV - but he wants me with him. He can watch the same programs over and over without remembering them - drives me crazy! I can't maintain this place if I have to pay for placement. Might be able to have live-in help upstairs but DH refuses to have anyone if the house. Doesn't want to sell the horses even though neither of us can ride now. I have to pay to have the fields mowed and work done on the house. Our income will remain the same as long as one of us is alive but groceries & other necessary items have already risen in cost so I have to penny pinch. I can't save enough to make the extra money we'll need. I don't think we'll be able to qualify for medicaid. How do all of you handle these financial questions?? What do you do when there isn't enough money to stretch?
Including in your meetings with a lawyer, I would talk to an elder attorney and a Medicaid attorney. They are things you can do to legal protect some assets. I am sorry you dream house and dream of spending your golden years there have gone down the drain. That is what makes it so different when it is your spouse - you dreams in golden years are gone, your other half gone, the one you could talk and plan with - gone.
I am finally drawing SS but all my plans to save some has gotten waysided with dental bills for me then he needs some work. I just download the guidelines for Medicaid in our state. No problem except an insurance policy his mom bought when he was born has a cash value higher than $1500 that is allowed. I will cash it in and pay for cremation for him and if enough for me. According to the guidelines I will be able to keep $2000 a month. I was shocked. Will be interesting when the time comes if that is true.
Dear Oakridge! Do not despair. It sounds as if you do need to sell your dream home and that is quite possible to do! I am not a realtor, but I know there are some that specialize in unique properties such as yours. Someone out there will love all the things that make it special to you. The sooner you start, the more chance that person will find you. Do not be deterred by your husband's desire not to sell. He is no longer capable of making that decision. When the time comes, you will find some way to cause him to sign whatever papers need to be signed. It is very hard for us spouses to take control when things have always been done in partnership, but that is where we all are now. You can start by contacting some local realtors. You can research properties on line to see what is available similar to yours and what the selling prices are. Your dream home can become someone else's dream. It does not need to be an albatross. With all you have put into it, it can become a source of strength. You can do this.
oakridge: I cannot stress meeting with an attorney ASAP. You want these documents moving everything into your name drawn up as soon as possible. You need POA, medical POA, and wills as well. My husband lost his unique signature right in the middle of signing holiday cards. He signed 7 or 8, and on the ninth his signature looked like a fourth grader's. He never regained his ability to sign his particular way again. Thank goodness all of the legal papers were signed before this happened.
Our attorney had worked with us through the years so it was easy to tell him what was going on and have him plan on what should be done. My husband was still somewhat aware when he signed the documents and having these documents made navigating the next six years so much easier. It also stream-lined the estate because all it left were the IRAs in his name.
Be sure you know that the attorney will work with both of you and not force you to get a guardianship if you can manage without one.
This disease dashes lots of dreams. It sounds like that might happen to your farm. CarolVT said it all well.
Here is the thing that you have probably read over and over but needs repeating: Think of yourself first, not your husband. Make this work for you. You are the caretaker and his care depends on you. This might seem like selfish thinking but it really is not. Keep this thought foremost in your mind as you make all of the upcoming financial and legal plans.
First of all, as others have said, see an attorney and make sure you get your advance directives in place and get control of everything. This is not gold digging nor being grabby--it is essential to the care and well-being of both of you. You can discuss Medicaid issues with him, too, although it sounds to me as if you are above the Medicaid limits. And I think you need to divide your planning into three sections: 1) How to take care of DH. 2) How to take care of yourself and provide for your future post-Alzheimers. 3) How to take care of your horses, if possible, and along with that, the horse property, if there is any way to keep it.
There is plenty of advice on this website concerning 1 and 2. For the moment, I am focusing on number 3, having had horses myself for years (although not anymore.) You have not said how many you have--I assume at least two--nor how you are taking care of them. Since you can't ride any more, do you have anyone exercising them for you? If you are considering selling them, it would be best if they are tuned up in terms of being trained and exercised--which is going to cost money. And it's not really fair to the horses to keep them if you can't care for them properly. I myself spent a couple months on a quad cane with my arm in a cast following a bad fall--and was outside at least twice a day in the cold, snow, and sleet filling water buckets, throwing hay, etc.--awkward and painful or not, I had to take care of the two horses. It doesn't matter how sick you are or how bad you feel, you have to get out there and get stalls done, etc. etc. (But you know all that--I'm just saying--with your own health problems and your husband deteriorating, can you still do chores or afford to pay barn help to do them for you?) And can you really carry the heavy expenses of keeping horses--the grain, the hay, the farrier bills, the vet bills, the incidentals that come up? You don't mention any other animals, but I'm wondering if you have dogs or cats to think about also.
One thought I have--and it may not be realistic--is to try to hire someone as a live-in who can care for the horses and also be available to care for your husband. This would have to be someone with a set of job skills that may be hard to find. And you would need a second person as a back-up, unless you yourself could be the back up. This might allow you to keep your home, if you want to stay there yourself on a long term basis.
My other thought, which I think is sensible and realistic, would be to slash your spending down to a more manageable level-- sell the horses and the property and go into something far more affordable, easier to maintain, and perhaps closer to various services--like an apartment or small house in town within minutes of the grocery/bank/post office/church/library/doctor etc. I think all of us on this website had a "Plan A" that didn't work out because of Alzheimers--we all have had to come up with a "Plan B" that worked for us and that we could live with--it is so hard--as CarolVT put it so well, "You can do this."
Hi oakridge, I hope your lawyer also handles elderlaw issues. Most lawyers who handle trusts and estates do that, too, but it's best to check. You may also need a financial advisor.
A lot of dreams have crashed and burned due to Alzheimer's. I'm so sorry yours has done so, too. As far as your husband's refusal to sell the horses and to have any helpers in the house, at some point, you are going to have to ignore his wishes and go ahead and make these decisions on your own. Getting him to go along with what you decide is the hard part, but fortunately, as our spouses become more impaired and less aware of what's actually happening,it's often easier to do this.
I don't think you have to make up justifications for taking control of your financial and living situation. To the contrary, I think you would have to justify yourself if you do not take control. The founder of this site, Joan Gershman, used to compare our spouses to adult-sized special needs children, which I think is an accurate assessment. Would you allow an intellectually disabled child to make financial decisions? Of course not.
Thank each of you for bringing up valid points. I spent all afternoon yesterday on line researching. I have always handled our finances, once DH decided he would do it, one month and he gave it back :) Our only bump was when he finally learned to use a debit card - didn't always equate that little card with our bank account. Since I wrote that post I have learned a lot about things I never really thought about. No way we can ever qualify for medicaid due to our income. We have been married for many years so everything is in both our names. We are from CA where they have community property. But found out a few years ago MO has no such thing. I wanted to do our banking online and I wasn't allowed to because: "That is his money, if we allowed you access you could take it all". That set my red hair on fire and I said - it isn't his money, it's our money. The argument went all the way to the top and I got a special dispensation - which DH had to sign - allowing me to access our account. I've since learned to just use his name when I have to do something online. DH has a laptop and smart phone but they just gather dust. The family calls him technically challenged :) He was before computers and always had a room full of secretaries to handle them when they were installed.
But I digress. I got a lot of information online, found a certified elder law attorney in our community and am preparing the things we need to take in. Which led to a big fight last night trying to let DH know what was happening. He says he won't go, won't spend that kind of money, but at that time I'll just use a little fiblet to get him there. As for our home, just dumping it is out of the question for now because we have so much of our savings in it. It is strictly horse property and the house itself is not for a family with young children unless they wanted to spend money finishing up a couple more bedrooms downstairs. Great for teenagers, but realtor said it will take a special person to purchase it and we are in a down market. Selling has to give us enough money to move, find another place and live. We did discuss using the upstairs apartment for someone to help here and around the property and for the first time, he thought that was a good idea. Right now he usually takes care of the animals, enjoys it and it gets him outside. I always took care of the horses even when we had 47, we bred and trained them. He helped on the weekends when he was off work. I could do it again since we only have three. Our one neighbor has a teenage son that runs their cattle, we might get him to help. Our other neighbor is a retired RN. Both are very good neighbors and we have all helped each other since we moved here. So that is a plus for now. I've not driven our tractor but could learn :)
We have a set income, no bills other than normal living, but I'm sure there is someplace we can trim it down in order to put more back in savings. Our plan of using that money then putting it back right away, has fallen by the wayside.
What you have all taught me is there is a lot more that has to be done other than just taking care of DH. I still have a hard time separating my wonderful husband from this old man who is always angry with me, never understands, and forgets what I say anyway. Memory is about 90% totally gone. Has no memories of years past, not our special song, doesn't recognize pictures but he knows me, our kids, sometime grandkids, loves to FaceTime with our great GKs if I tell him who it is, and at least recognizes our two neighbors but doesn't remember their names. We are fortunate he is not as bad as some of you are dealing with - and since he will be 81 in a couple of weeks, the journey might not be as long. I'm only 5 yrs younger so wonder sometimes, which will be the last one standing. My mother and oldest sister died with AD, one has already been told she has some markers of AD, youngest died at 63 of massive stroke. We always thought I would be the one to get it, who knows what God has in store for for us. I apologize this is so long, it helps me to verbalize some of my problems, and I'm learning a lot. Thank you all
You might want to let the real estate agent know that while you aren't listing your property at this time, should the right buyer come along you would be interested in selling. Agents like to keep a possibilities list and often enough they can match a seller and buyer without having the property languish on the listed market.
oakridge, paulc makes a good point. Another suggestion is to call the lawyer, briefly explain the situation on the phone, and ask the lawyer whether it would be better to go to the appointment alone. Since the lawyer specializes in this area of law, it may be that he/she has strategies to deal with people like your husband.
Also, the fact that your husband has so little memory may mean that it's better not to try to get his agreement to things before it's necessary. What's the use if he just forgets what his position is on the issue?