Hello everyone, I stumbled upon this site and it looks like what I need right now. I am so lost and scared and can't think straight so I hope you can help ease my worries.
My husband started displaying symptoms about 2 years ago at the age of 45. He saw a multitude of doctors and specialists and had every test in the book. Even though they all agreed that there was something seriously wrong with him none of them thought it was AD because of his age. He was a highly educated medical professional that was very busy and under a lot of stress so they put it down to that. My husband continued to struggle with cognitive difficulties and eventually we had to close our practice because of it. He could no longer function at work. He became very bizarre and started making poor choices like walking along a busy highway for no reason in the middle of the night. I was scared for his safety and could not take it any more so I took him to the hospital where he has been for 3 months. He is still there today.
He has good days and bad days but now he is taking Galantimine there is marked improvement. When I took him in the hospital he was very confused and did not know where he was. Today it has become his home. He has structure and routines and lots of company and he is fed. At home he did not eat and lost over 50lbs. The other day I took him for coffee and did the MMSE test on him just to see where he was at. He scored 14 which is very poor. We talked about the future and day care centres. It was a good conversation , he understands what is happening to him.
Because of this disease we have gone from having it all......to having nothing. We have lost our life insurance and our savings have gone. Now our home is up for sale and I am going to have to reduce the price to sell it quickly to keep the bank happy. I never had to do anything before, my husband did everything for me and he spoiled me rotten and now it is my turn to take care of him. I work full time and we have our 14 yr old daughter at home. Because of the stress of selling our home and the fact that there is no one home to watch him my husband has to stay in the hospital. He is only 47.
Our oldest daughter is 19 and resents us both. I keep telling her that we didn't choose this, that it is not our fault but she is very angry. She is away at University right now but does not want to come home. I think it is too hard for her as she wants her old life back...we all do! So that is very hard for me to deal with too on top of everything else. Our youngest daughter is wonderful, she is very helpful and supportive of us both and accepts what is happening as out of our hands.
I just feel so overwhelmed. I have constant phone calls from creditors wanting money that my husband owes. I have to pay every bill and have very little money to work with. I know my husband will get a disability each month but have no idea how much. I just don't know what to think anymore. I am so sad. I hate my husband being in the hospital but I find it difficult when he comes home for weekends and I end up exhausted by Sunday night, then I am a wreck at work on Monday. I have got myself so low that I am off sick right now with stomach problems.
I am sorry to ramble on but I zm 45 yrs old and I just don't know if I will ever have a good life again. I want to sell the house and take my husband and daughter away so that he can have some fun, so that they can have some good memories again. Has anyone done this?
Welcome aboard, and like so many others will tell you, I am so sorry you need to be here with us...or that any of us need to be here. I know you are overwhelmed, but it looks like you are doing a lot of the things you need to do. It looks like everything is crashing down on you at the same time. It is good that your younger daughter is coping so well at this point. I suspect she will be able to help her sister learn to understand and cope. It will just take time. Although it is easier said than done, try not to let the creditors get to you. Nothing gets done overnight. Try to remember to breathe and take one crisis at a time. Stay on-line with us...there are a lot of amazing people with immense wisdom.
I'm so sorry for your troubles. We didn't have EOAD, my DH is 82, so I can only imagine what you are going through. Very sad! Very hard for the girls. Incredibly hard for you. Perhaps the creditors will accept regular partial payments. That way they'll know you are trying and they'll eventually get their $$.
Blessings. Again, wish I could help more. But, perhaps knowing we all care wil help a little bit.
Nuts. I have GOT to go grocery shopping RIGHT NOW, or we don't eat tonight. Ukgrl, are you in the UK or in the states? Because I've seen references to a site that helps you find ways to stay in your home if you're in the US. I can look it up if you're interested. Back in a bit...
Welcome to my website. You cannot tackle everything at once, so try to take a few deep calming breaths, and know that there are scores of people and resources to help you. In the first place, there are so many young spouses just like you with children at home or in college who visit this website. Know that you are not alone, and I am sure they will be along in the next few hours and days to write to you.
Knowledge is power, and whatever you learn will give you the ability to cope with this situation a little better. Please go to the home page of this website - www.thealzheimerspouse.com - and look on the left side. Scroll down to "Newly Diagnosed/New to this Website, and read that section. Next, I would suggest reading the EOAD section that is a little farther down. Then I would suggest reading the "Finance" topic. I am in the process of putting up another topic on SS disability, but it's not ready yet. Also, scroll through the "previous blog" section for topics that interest you.
And finally, go to the top of this page, and click "search". Type in EOAD, and you will see at least 4 or 5 different discussions on the topic. You can type in most any subject related to AD, and there will be a discussion on it.
Log onto the home page - www.thealzheimerspouse.com - every day, as there are always new blogs, information, and daily news.
You have come to the place that understands what it is to lose a spouse, bit by bit, to Alzheimer's Disease.
Welcome ukgirl, I am also so sorry you have the need to join our group. I can somewhat relate to you, my husband is 57 years old with FTD. He started having memory problems at age 50. Also, had numerous test with doctors saying nothing was consistent with AD, however, his memory declined every year. Finally he had to retire at 52 years old. I must admit sometimes I am very ticked off that this has happen to us at this time in our life, we had so many plans after retirement, which are all gone. I am very sorry your oldest daughter is having such a hard time dealing, however, you can't blame her, she just wants to have her family back. Hopefully, in time she will come around. Dementia, is such a hard disease to understand. Most look normal, however, they are not. I am glad you found this forum. You will find everyone kind, helpful beyond belief & non-judgemental. Please feel free to post at anytime.
I haven't had to try this, but according to caregivers on "the other site", this is a wonderful organization that helps people keep their homes:
http://www.NACA.com
Creditors are NOT allowed to harrass you. Not, not, not. They're not allowed to call you repeatedly or call you at odd hours, you can tell them you only want to communicate in writing and they have to comply, they're not allowed to make threats, they're not allowed to embarrass you by contacting neighbors and relatives, they're not allowed to contact you at work if you tell them to knock it off. You have rights. If you'd like some web pages on this subject, please let me know.
You may want to check into whether a Chapter 13 or a Chapter 7 bankruptcy would be beneficial for you. In Chapter 13, you work out a plan to repay your creditors according to a reasonable schedule. In Chapter 7, you do not have to pay, and your debts are "forgiven." Either one has an effect on your credit score, with Chapter 7 obviously having a worse impact, but it sounds as if that's pretty much in the tank, any way. With Chapter 13, you can probably protect your house. The minute you file either one, everyone has to back off and stop any and all collection actions of any sort until your case has been heard, and your bankruptcy attorney will deal with those who don't. Find a good bankruptcy attorney and ask for a consultation. You can probably get a consultation for free, to discuss the pro's and con's and whether either type is right for you. They usually charge a flat rate if you agree to go forward, depending on the complexity of your case, and it isn't all that much.
So sorry for all your problems. Sounds like you have your hands full. There are many young ones here and I am sure you will receive lots of good advice. I am 70 and H 73 so much older. That is terrible hard for you and your daughters. Some young people (most) will take a while to accept things that they don't want to hear. Just try and keep communication open and bear with her.
ukgrl, as an addition to Sunshyne's info--in a Chapter 7 Bankruptcy, you can keep the house if you keep up the payments. It goes throught the process in a special category and then when the process is completed, you recommit to the debt for it. There are proper terms for this but at the moment I don't remember what they are. I know this works because we've been there/done that. The relief of having the creditors and debt off your back and out of your face far outweighs the adjustments of having no credit, and for a while not being able to get any. If/when he gets his disability be sure they know of your younger daughter. She should qualify for a support check until she's 18 or graduates from High School (whichever comes last or up to 19). It would amount to 1/2 of whatever he draws, and is to be used for her needs (like child support). They should process her claim right along with his.
Hang in there. Take one thing at a time. Remember, anything needing doing, will be there until you get there. Unfortunately there are no little elves helping us, but we do a pretty fine job of helping each other.
First,take a very deep breath. Everyone on this site is here for you,if one of us doesn't have an answer for you someone else will. I know, I have asked and helped with a few. We are all under tremendous pressure to do the right thing, but as my daddy says, sometimes you have to look out for you first (meaning you and your family) and do what you need to do to survive. Survival first. One little step at a time,I know it sounds silly to some,but when its broken down to one task at a time,somehow its easier to cope with. And learn to ask for help, I have had to.
As far as survival, you may want to look into bankruptcy as others have mentioned. It will take a tremendous load off your shoulders. Also,there may be places where you can get energy assistance and other programs to help. AD and dementia's cause every member of the family to be affected and your family sounds like it needs some tender loving care. There are also food banks that have resources to refer you to other programs, medical clinics,rx programs,dental programs,etc. I would have not made it this far had I let my pride go and realize what my real priorities are .... a roof over your head,food on the table,clothes on your back and your necessary utilities. The creditors can be made to wait, notify them to only contact you by mail,use your caller id in the meantime not to take a call you don't know who is from. Talk to an attorney about your bankruptcy options, find one who will do a free consultation as some charge for the visit. I know of amny who have had this be their best option when diaster beyond your control hits.
Take care of yourself so that you don't fall to caregiver stress. Does your husband have a social worker at the hospital to talk about his options once he is released?
carosi, thanks for the info re Chapter 7. I wasn't sure about that one, and didn't want to raise hopes if the house couldn't be protected.
I've been getting plenty of experience with the bankruptcy/creditor issues due to my company going belly-up. It really, really, really makes a difference if you know what your rights are and can stop those creditors from hounding you, doesn't it???!!! And to have an attorney to defend you against the creditors who don't play by the rules can make you feel SO much better.
One thing I forgot to mention -- I have an answering machine and I let ALL calls go there. The last thing you want to do is get caught unexpectedly by a creditor. Keep a log of all calls, and whether they're playing by the rules (identifying themselves and the company for which they work, for example, which they are required by law to do, claiming to be attorneys if they're not, and whether they made threats or unreasonable demands). And in my book, don't talk with them at all -- notify them that you will only communicate in writing. That way, you have a solid record of who said what when ... and they can't bully and threaten you. And YOU won't inadvertently say something you shouldn't.
The word is "Reaffirm". You can reaffirm certain debts at the end of the process--usually just the house, but could be a car (secured debts). Frankly, the purpose of thge bankruptcy is defeated if you reaffirm a bunch of the debts.
See below about avoiding inadvertant reaffirmations.
Also, Once the case is filed with the court and creditors have been notified (allow 2 weeks after filing date) they are not allowed to contact you anymore, period. Our attorney told me to refer all calls I got to his office once we started getting the case together, so that helped me immensely.
After everything is done, do not contact any of the Companies whose accounts were discharged. They could try to hook you into acknowledging the old debt and if there is a record that you said anything like that, it reinstates the debt. Reaffirms it.
Keep in mind, Bankruptcy was instituted as a means of resolving debt in cases of critical need, not as a convenience. There is no guilt in seeking help with overwhelming debt due to unforseen crises. The new boat you're in is more fragile and not made to carry the load you had. This is sometimes a necessary step to getting control of your life in your new circumstances.
I don't think that I need to consider bankruptcy. The debts are in my husbands name and they are small ( under $5,000) I will be able to pay them when I sell the house. I am going to have to reduce the price to sell it quicker but I am okay with that. Like you say, better to get the creditors off my back and have a clean slate than put up with the stress. So, I have un plugged my phone and I am ignoring the creditors. They know the situation and they know my husband can't do anything about it. Would you believe it they even called the hospital! I can't even give them partial payment as all the money I have is going towards the house and utilities. I live in Canada so I know things are a little different but the stress of living with this disease is universal.
Today I found out they want to discharge him. I work full time and have a committment 3 nights a week with my daughter. He will be alone a long time. We have no one to come and see him. We live in the country so there is no where he can go. I dread to think what he will do when the realtor wants to show the house. He will have to disappear for an hour. No neighbour he can go and see, nothing. Originally the doctors said they did not want him going home when the house was on the market as it is a stressful situation. Also I am barely hanging on myself. We all agreed he should stay in the hospital until the house sells but he does not belong there and there is nowhere else for him to go. Now his psychiatrist has been replaced by another one who is disagreeing with the diagnosis and putting ideas into his head telling him he is getting better because he is scoring well on some cognitive tests. My husband knew the diagnosis and was dealing with it well as were we. Now I have him back to thinking he can go back to work like before as he is getting " better". I gave him the MMSE test and he scored 14 out of 30. He didn't even know that today was his daughters birthday. But of course he's all better now......! I am so mad !
I have no idea how I am going to cope when he comes home. He exhausts me and irritates me too. I'm sorry but I had to say it. I would appreciate any tips on how to not let this happen. I keep remembering him before when he was the adoring husband, such a lifetime ago. That helps me.
I agree that we should all have hope but I also think we have to be realistic and take each day as it comes. I go to work and take care of everyone day in day out and try not to think too much. On days like today ,which has always been a happy day for us all celebrating our daughters birthday, I struggle. I feel very sad and very angry today.
Oh how quickly our lives can change. Does anyone else have any resentment towards their spouse? I am struggling with this and I don't like it. I know it is not his fault... Once again, thank you all so much. God bless you all.
I feel your pain re: the psychiatrist. I have come to the conclusion that psychiatrist and neurologist have no use for each other and basically hate each other. If one says black, the other says white. I literally had your situation with the psychiatrist. After the 2nd appointment when he told me that I would have to convince him that my husband had AD, I thought to myself...no, I don't...I shouldn't have to convince you (the doctor) of anything!!! YOU ARE THE DOCTOR!!!! I changed psychiatrists. We now deal with the head of the department, but it isn't much better. We have now seen him 4 times over the last 9 months and the last visit was the first one he kinda, sorta admitted that my DH may have AD. They admit that a large part of their diagnosis is based on what the caretakers report about the behaviors of our LO, but then they don't want to listen to what we say because they think our LO is too young to have AD! I was very worried that the disagreement between the two departments would effect his treatment and interfere with his SSDI application, but neither has happened. It is so frustrating.
I do sometimes resent our situation and I guess, to be honest, sometimes I resent him. I work 10 hour days plus a 1 hour commute Mon-Thurs (Fridays off are spent running him or my mom to the doctor an hour away), then I come home to my 2nd job...taking care of everything at home. Meanwhile, he has either been off that day or maybe worked 4 hours at the Library. He sleeps until about 10am, sometimes takes a walk in the neighborhood if the weather is nice, watches TV, takes naps. He complains about always being tired or bored. He refuses to do any house work and NO yardwork. The most he will do around the house is a little laundry (but does't finish) and empty the trash cans. He won't fix dinner or even try. Anytime I ask him to do the simplist thing to help me, it becomes a major ordeal. He will either partially do a task, promising to finish it tomorrow (which he never does) or procrastinates entirely and never does it. It is hard to figure out how much is the disease and how much of it is just him being a "man". He never liked to do any of these things before he got sick, now it is so much worse. He is like a child who only wants to do "fun" things and be entertained and have no adult responsibilities. I also struggle and don't like the way I feel. I know I didn't say anything that helps you, but you are not alone with these ugly feelings.
Stephanie, when you said he was like a child, you hit it right on the head. I've seen several web sites that explain what is happening as the dementia progresses as dealing with a child at different ages. Have a look at the Big Tree Murphy site.
First you want this page. http://bigtreemurphy.com/SOC%20home.htm
And then you want this one for the whole "like a child" thing: http://bigtreemurphy.com/SOCCaregiving%20in%20Terms%20of%20Parenting.htm
If you understand what is going on, it is all so much easier to take. You stop expecting rational behavior, or the ability to have responsibilities, and the anxiety goes down.
It isn't that you stop feeling angry and frustrated, because you still have those feelings and it is OK to have them and acknowledge them. And please remember it is OK to vent and this is one of the safest places you can do it.
Stephanie I really feel your frustration. My husband is oblivious to the stress I am under. He could not care less that I work full time and that he owes money all over the place. What frustrates me the most is he has loans that he took out using the house as collateral, one that I did not know about, he co erced me to sign papers as I was packing to go to Europe and I didn't read it, I just signed. He did this when he had no symptoms but now he just says " I wasn't in my right head". I think he is using this as an excuse for all the bad things he has done. I know that for the past year he definately was not in his right head but prior to that , even though I am sure the AD was starting to some degree, I think he was well aware of what he was doing.
Now I have to sell the house and pay those loans off which irks me no end as it eats into the money that we need to live off and the debts are business debts that we are paying for with personal money. He even had the cheek to ask me if the house was going to be sold 50/50 the other day. I was shocked. I felt like saying " you've had your 50% buddy!" but I did'nt. I know the decisions he made were wrong but he did them for the right reasons which was to try to keep the business going and keep his family in the lifesyle they had become used to. Here I am at home trying my best to juggle money and pay the mortgage and the bills, selling things to get by and barely eating because I can't afford food and he asks me that. I think he has people in the hospital putting thoughts into his head about me that are unfair. If I didn't have my daughters I would drive into a mac truck and end it all.
My husband also did similar things, although not as drastic. It was easier for me to catch his out of control, frivilous spending as I have been in control of our finances since his stroke 5 years ago...and Thank God for on-line banking. I was able to catch things sooner. Those shirts on the sale rack are such a bargain at only $7 each, but when you buy 8 of them, it kind of defeats the purpose. And when you multiply the money spent on that bargain by all of the other bargains he finds, plus he can't seem to eat lunch in a restaurant for less than $15, because he has to leave at least a $5 tip multiplied by everyday because he always wants to eat out....and he doesn't seem to think I notice all of the times he gets $20 cash back off of other purposes....aaarrrrrr!!!!! We have agreed that he can only have his debit card when he needs gas or prescriptions. I still send him to the grocery store, too. He can still do all of these things, most of the time without any problems. But I got so tired of talking to him "like a spouse" explaining our last name is not Rockerfeller. We no longer have extra money like we used to and we cannot just buy whatever we want whenever we want. We have a budget. I am trying to pay back our savings that we had to live on when he suddenly quit his job last year. Especially the account that was a special SBA loan that was dedicated to repairing the house after the hurricanes 3 years ago. I keep praying the government doesn't knock on the door and want to see the receipts for the work I haven't had done yet. I don't think they will understand how busy I have been. On the one hand I have a hard time believing he can't remember just one of the hundreds of conversations we have had about our finances...just one!!! I really think he knows he shouldn't, but he really can't control his impulses. Sometimes, he hides things from me because he knows I will get upset. Last summer a friend of his came to New Orleans to visit for a few days, so he drove into town to have lunch with her. He lost track of time and forgot to feed the parking meter while in the restaurant. He knows I have always hated things like parking tickets, because I believe they are such a waste of money and they are so avoidable with a little care and personal responsibility. He hid the ticket from me, which was $20. I can think of so many other ways I'd rather spend $20. By the time I found the ticket over 2 months later, the fine was $80. I was furious. I couldn't help it. Here I am sacrificing and scrimping to save and he just throws it away.
My husband is also oblivious to how much work and responsibility I have and how much stress I am under. Every once in a while he will thank me for all that I do or acknowledge my stress, and while I truly believe he is sincere, the look in his eyes tells me he doesn't have a clue about the degree of stress.
I feel bad for you with all of this and having sell your home and move on top of it all and children. (heavy sigh!)
Please stay away from mac trucks...we need you, too...stick with us...and thanks for letting me vent.
ukgirl----I wanted to say "welcome" to our website, sorry that you are here, but YOU ARE NOT ALONE! The year my DH was diagnosed we had a freshmen in college and a freshmen in high school----both girls----so I know that scenario. Yes, we all wish we had our old life back, we all know that won't happen, BUT IT'S OKAY TO WISH IT! Actually, my minister confirmed that feeling that way is OK, so some days, I allow myself to be resentful and wish for my old life back, then I snap out of it and move on. I will try to add more later, but I'm actually heading off to my office on a Saturday to get some work done, because a friend took my DH out of town last night, and he won't be back until later this afternoon, so maybe I can actually concentrate at work, when I usually worry! Mostly, I just wanted you to know that you are not alone and resentment is TOTALLY normal. In fact, I might worry about you if you were not...hang in there!
ukgirl-you've lost all your hopes and dreams-why not resent it. Well meaning people will tell you that it's the disease not the person. A lot of good that does. Dementia is not your fault but you are the one who has to cope with it. My husband is in a dementia facility now-but there were times when I actually hated him. Thanks to this group the hate is gone-but no emotion other than pity has replaced it.