cyt
08-13-2005, 12:15 AM
Hi - I am new here. I have been studying AD for a few years now, since my Father-in-law has dementia. That's not why I'm here. I'm here because I'm worried that my husband has early-onset Alzheimer's. He is 57. I've noticed changes, subtle at first, for the past couple of years. It's gotten to the point now where they are glaring changes. I want to say right up front that he has not been to a doctor with these problems. These are my fears and have not been confirmed. He still works. Thank God he's been at his job for so long that he knows it well. He has made some mistakes recently off and on, but nothing major. The problem is his memory loss and his personality changes. We have 2 teenagers and they are bothered by it too. Whenever we bring something up that has happened in the past, be it 2 years ago or last month, he doesn't remember it. Names of the kids friends, forget it. He doesn't remember. We tell him things and later on he doesn't remember them. It's getting worse. And his personality has changed too. It's also very hard to communicate anything to him for me and the kids. We'll tell him something and he asks us a hundred questions, trying to understand. It is so frustrating to us. I get so angry. Sometimes I ask him about his memory problem and he doesn't think he has one. He readily admits to things he doesn't remember and yet he says he doesn't have a problem?? I'm scared. I don't like this. I've always stayed home and raised the kids. Now I feel trapped. I want to get away from him - I don't like him anymore. I feel like a horrible person for even saying it, but yet, it's true. I don't want to take care of him when he gets worse. I saw what that did to my Mom when she took care of Dad for 6 years after his stroke. It almost killed her. I'm 52 years old. What kind of a future do we have? The kids can get out of here in another couple of years and have a life and I want that for them. I get so depressed about it. I don't want to take him to the doctor. I know the medicine is too expensive for us to buy and it doesn't help that much anyway. What can I do to cope with this?? I know too it may be something else going on with him, but he has all the classic symptoms. I know it's not simply a middle aged man going through some change of life here. I've known him for 24 years and I know something is terribly wrong with him. I needed to vent and thanks for listening. I know you'll tell me to take him in and get him looked at, but he doesn't think he has a problem and I also know how hard this is to diagnois. I also know we can't affort a bunch of expensive tests. Has anyone else seen this happen in a person of 57, and if so, what are the beginning stages like for you? I've read the stages, and feel he is pretty much in stage 3. I feel like I'm living with a stranger. Thanks for your thoughts (and prayers). cyt
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ToBeFreeToRoam
08-13-2005, 01:19 AM
Hi cyt,
I am glad that you came here to vent and talk. You picked the right place. There are some really nice, caring, smart ladies here. They will give you some good advice and help - but, probably not til tomorrow.
I am sorry if your husband is not acting the same as he used to. Did you try the library for some books on AD? Maybe there is one on early onset?! My father did not get AD until he was 70 - 75. He was not diagnosed (taken to the dr.), until he was 77. He is now 78. I would say he is in stage 5 - 6.
My dad did have an expensive "head" test (where they hook you up to a machine with the little circles hooked to a machine - the circles are on your head.). That test said he was normal. But his neurologist, did a short written and talking test and walking, and diagnosed him with alzheimers and parkinson.
Maybe if you and your daughters could talk to him and find something to show him - some kind of 1 pg article? - you guys could convince him to go to a neurologist. And if you told that dr., that you could not afford lots of test, maybe he would just do the in office mental test. You do not have to tell your husband that it is a mental test.
I know very little about early onset. I hope you get some good advice and help tomorrow. Keep coming back and talking and venting. That helps, too.
Take care. Wannabe
I am glad that you came here to vent and talk. You picked the right place. There are some really nice, caring, smart ladies here. They will give you some good advice and help - but, probably not til tomorrow.
I am sorry if your husband is not acting the same as he used to. Did you try the library for some books on AD? Maybe there is one on early onset?! My father did not get AD until he was 70 - 75. He was not diagnosed (taken to the dr.), until he was 77. He is now 78. I would say he is in stage 5 - 6.
My dad did have an expensive "head" test (where they hook you up to a machine with the little circles hooked to a machine - the circles are on your head.). That test said he was normal. But his neurologist, did a short written and talking test and walking, and diagnosed him with alzheimers and parkinson.
Maybe if you and your daughters could talk to him and find something to show him - some kind of 1 pg article? - you guys could convince him to go to a neurologist. And if you told that dr., that you could not afford lots of test, maybe he would just do the in office mental test. You do not have to tell your husband that it is a mental test.
I know very little about early onset. I hope you get some good advice and help tomorrow. Keep coming back and talking and venting. That helps, too.
Take care. Wannabe
camachinist
08-13-2005, 01:38 AM
I'd suggest a routine physical, and letting the doctor/nurse know, in advance, of your concerns. No need to make a big deal about it with hubby. Denial is a hallmark of early-stage AD/dementia, if that is in fact what he has.
Take it one step at a time and get the obvious physical stuff checked out first. Many "dementias" are fully reversible with simple lifestyle changes and/or treatments. As a caregiver, I know stress can be a big causal factor in reversible dementias, like those caregivers get. I've had it. Not pretty.
Best wishes!
Pat
Take it one step at a time and get the obvious physical stuff checked out first. Many "dementias" are fully reversible with simple lifestyle changes and/or treatments. As a caregiver, I know stress can be a big causal factor in reversible dementias, like those caregivers get. I've had it. Not pretty.
Best wishes!
Pat
BarbaraH
08-13-2005, 10:16 AM
Hi Cyt,
Sorry you need to be here. I cannot imagine how difficult your situation and I do hope it's something reversible. Sadly, 57 is not too young for early onset Alzheimer's. Also sadly, no matter how long your husband has done his job, that ability and understanding will disappear at some point if it's Alzheimers.
My little mother had Alzheimer's but it didn't start until she was about 84.
I also say you must start with a doctor. It can be more affordable if you live near a teaching hospital or the VA if your husband is a veteran. Whatever ruse you use to get him there, he must be tested and examined to find out what is going on. If it's a reversible problem, that will be a great bonus.
If you read back through the posts, those by Beginning address her situation which is very similar to yours. There is lots of good information here, practical suggestions, and just hugs and support.
If you're must be here, you're not alone on this most unwelcome road. Talk and vent as needed.
Wishing you well - Barbara :wave:
Sorry you need to be here. I cannot imagine how difficult your situation and I do hope it's something reversible. Sadly, 57 is not too young for early onset Alzheimer's. Also sadly, no matter how long your husband has done his job, that ability and understanding will disappear at some point if it's Alzheimers.
My little mother had Alzheimer's but it didn't start until she was about 84.
I also say you must start with a doctor. It can be more affordable if you live near a teaching hospital or the VA if your husband is a veteran. Whatever ruse you use to get him there, he must be tested and examined to find out what is going on. If it's a reversible problem, that will be a great bonus.
If you read back through the posts, those by Beginning address her situation which is very similar to yours. There is lots of good information here, practical suggestions, and just hugs and support.
If you're must be here, you're not alone on this most unwelcome road. Talk and vent as needed.
Wishing you well - Barbara :wave:
Martha H
08-13-2005, 10:41 AM
Dear Cyt,
I agree that a doctor has to see him under whatever ruse you need to use. Imagine if his personality change is NOT dementia at all but a slow growing operable brain tumor? Or a kind of Parkinson's or other dsease treatable by medicines? He could get well and be his old self again.
If not .. you have a hard row to hoe ahead of you and you have my utter sympathy .. I know how hard it was to care for my Mom, but I am sure a husband is ever so much harder, since you don't expect such an 'old age' problem to affect him, and you practially lose him as a partner years befoe you lose him physically. You have to take care of everything yourself. It would be important if this is the case to get Power of Attorney for him so you can manage financial matters if he gets too confused to do it (right) .. your daughters can also help a lot there, as he may prefer to designate the oldest child rather than you.
Since you have been a mother and wife all these years it will be a shock if he is unable to continue working. I wonder if it would be a good idea for you to take some courses or get part time employment now while he still functions pretty well ... so later you have recent experience/traiining if you have to be the sole support of the family.
But let's not even think that far ahead - most important is to go for an 'annual' checkup and inform the doctor by phone or hand him/her a note at the time, saying 'my husband has become very forgetful and I am worried about it' ..then he can do the simple memory test as part of a normal conversation.
Early onset cases are sometimes slowed down by medications (yet another reason to bet diagnosed.) I always felt angry that my Mom could not be helped, and the words 'postpones inability to function as much as 18 months' seems a hollow promise. But in a person as young as your husband, 18 months of ability to support the family would be a great blessing.
Try to get him to a GOOD doctor soon .. it is really the best thing you can do for both of you and the girls.
love,
Martha
I agree that a doctor has to see him under whatever ruse you need to use. Imagine if his personality change is NOT dementia at all but a slow growing operable brain tumor? Or a kind of Parkinson's or other dsease treatable by medicines? He could get well and be his old self again.
If not .. you have a hard row to hoe ahead of you and you have my utter sympathy .. I know how hard it was to care for my Mom, but I am sure a husband is ever so much harder, since you don't expect such an 'old age' problem to affect him, and you practially lose him as a partner years befoe you lose him physically. You have to take care of everything yourself. It would be important if this is the case to get Power of Attorney for him so you can manage financial matters if he gets too confused to do it (right) .. your daughters can also help a lot there, as he may prefer to designate the oldest child rather than you.
Since you have been a mother and wife all these years it will be a shock if he is unable to continue working. I wonder if it would be a good idea for you to take some courses or get part time employment now while he still functions pretty well ... so later you have recent experience/traiining if you have to be the sole support of the family.
But let's not even think that far ahead - most important is to go for an 'annual' checkup and inform the doctor by phone or hand him/her a note at the time, saying 'my husband has become very forgetful and I am worried about it' ..then he can do the simple memory test as part of a normal conversation.
Early onset cases are sometimes slowed down by medications (yet another reason to bet diagnosed.) I always felt angry that my Mom could not be helped, and the words 'postpones inability to function as much as 18 months' seems a hollow promise. But in a person as young as your husband, 18 months of ability to support the family would be a great blessing.
Try to get him to a GOOD doctor soon .. it is really the best thing you can do for both of you and the girls.
love,
Martha
cyt
08-13-2005, 11:22 AM
Thank you ALL so much for your kind words of wisdom. After I posted this, I began to worry that everyone would think me a horrible, uncaring person. Now I see that you all understand. It's not that I don't care about him, it's just that he's changed so much that it makes it hard to care. I will try to do as you suggested, and yes, I have been looking into part-time work to get back into the game. I try and take life one day at a time and not borrow trouble, but also be prepared for the future, too. Another thing I didn't mention last night, my husband travels for his job and sometimes he goes on a highway that has about a mile long, well lite tunnel. He has noticed and told me that just about every time he goes through that tunnel, after he gets to the outside, he doesn't remember going through the tunnel at all. I told him that sounded like a "Twilight Zone" experience. He just got home last night from traveling and said the same thing happened to him. It must be frustrating for him too. I'll try and be more patient - I'm thinking of writing out my own mini-memory test to give him. You know, questions about his past that he should know and I know the answers to, history questions, etc. What do you think? I don't think he would mind doing it. Anyway, take care all, I know what a hard job a caregiver has. My prayers will be with you. cyt
Sandyspen
08-13-2005, 11:54 AM
Hi Cyt,
I agree with everyone else here. It is a difficult road if your hubby has Alzheimers or Dementia. And very scarey, to your hubby and yourself. My Mom has dementia and I can't even imagine it being my husband. I wish you all the strength you'll need to deal with this issue.
Actually, there is an MMSE very small memory test that they can give your husband. Not expensive, just a small memory test that the doctor can give right in his office. I believe it is listed here, in one of the posts. You can also find it by doing a search on Google.
The problem with doing your own test (with past history, etc.) is that they remember most things in their distant past for a long time. With my mom's dementia, it is current events that she doesn't remember. She has just begun to lose those old memories, or they are jumbled or fabricated so that they are no longer accurate. But the early signs are recent memory loss. She can't remember what happened yesterday.
She will say the same things over and over and ask the same questions a million times in one day. It's maddening for the caretaker to tell what day it is 20 times a day. That was my first indication with my Mom. She would call 2 or 3 times a day when she lived on her own, to ask me what day it was, what year, what season.
And, if she had traveled through a tunnel for longer than 2 minutes, she too, wouldn't have remembered entering it in the first place.
You're doing the right thing. You're searching for answers. You're venting your feelings. We have to do that, and there are no right or wrong when it comes to feelings. We feel what we feel. You won't be judged here. We have probably felt the same things you're feeling at sometime while dealing with this horrible disease.
But...........if there is anyway you can get your hubby to a doctor, that would be best. Because as someone else said, there might be another cause. Something that is treatable.
Come here often, vent your feelings. We feel your pain. Our thoughts are with you.
I agree with everyone else here. It is a difficult road if your hubby has Alzheimers or Dementia. And very scarey, to your hubby and yourself. My Mom has dementia and I can't even imagine it being my husband. I wish you all the strength you'll need to deal with this issue.
Actually, there is an MMSE very small memory test that they can give your husband. Not expensive, just a small memory test that the doctor can give right in his office. I believe it is listed here, in one of the posts. You can also find it by doing a search on Google.
The problem with doing your own test (with past history, etc.) is that they remember most things in their distant past for a long time. With my mom's dementia, it is current events that she doesn't remember. She has just begun to lose those old memories, or they are jumbled or fabricated so that they are no longer accurate. But the early signs are recent memory loss. She can't remember what happened yesterday.
She will say the same things over and over and ask the same questions a million times in one day. It's maddening for the caretaker to tell what day it is 20 times a day. That was my first indication with my Mom. She would call 2 or 3 times a day when she lived on her own, to ask me what day it was, what year, what season.
And, if she had traveled through a tunnel for longer than 2 minutes, she too, wouldn't have remembered entering it in the first place.
You're doing the right thing. You're searching for answers. You're venting your feelings. We have to do that, and there are no right or wrong when it comes to feelings. We feel what we feel. You won't be judged here. We have probably felt the same things you're feeling at sometime while dealing with this horrible disease.
But...........if there is anyway you can get your hubby to a doctor, that would be best. Because as someone else said, there might be another cause. Something that is treatable.
Come here often, vent your feelings. We feel your pain. Our thoughts are with you.
janeslk
09-14-2005, 11:16 AM
I know this was posted a month ago, but I am curious. Does your husband take any sort of statin drugs? I have read several cases lately in which people thought they had early AD, but it turned out it was a reaction to Lipitor.
Beginning
09-14-2005, 12:37 PM
I'm sorry that I missed this string -- with 3 teens going in every direction, supporting the family and trying to keep up the house, my internet time is sometimes limited. I do read the postings, but my contributions seem so small compared with the support offered by the regulars.
I recommend getting him to the Dr while he's still working and has health insurance. It might be something that is fixable, and might not be AD. He might have depression, sleep disorders, mini-strokes, a brain tumor, work stress, medication problems, etc. Don't panic yet.
My husband was 59 when diagnosed. We ended up seeing several neurologists and even went to an Alzhemiers research center since it was such a shock. He was having problems finding words, as opposed to memory problems (now he has memory loss too). We had no family history of the disease, so this came out of the blue. I would have been prepared for a cancer diagnosis or for him to have a heart attack instead of this diagnosis! I look back now, and realize that for 1-2 years before he was diagnosed that he wasn't acting the same way. His personal belongings were really cluttered, his income had dropped and he was less involved in our family. Getting him to make a decision about a restaurant became a big deal. I was getting angry since I felt like I was carrying more and more of the load. Now I realize that these were early symptoms of the disease.
Getting the diagnosis was the worst time of our lives. I look back on the first year with horror. I went around telling people that my husband had a terminal disease, since I was trying to accept the loss of our future. I made list after list, trying to put our affairs in order as if he was going to die tomorrow. Our kids all reacted in different ways, but that's another story. My husband lost his drivers' license and we went through months of trying to get it back, I learned he was driving secretly (he has stopped this), etc. He had to stop his profession, and we learned that he couldn't have income for 6 months due to disability before he would be eligible for SS disability. Getting through that 6 months was hell -- but we survived! We spent $350 for an hour of an Elder Care lawyers' time, and learned all the things that we needed to do (I kept telling the lawyer to talk faster...believe me, I got my money's worth!). Then we went to a cheaper lawyer to have the Wills, real estate transfer, power of attorney, etc. done while my husband was still competent. We changed beneficiaries on 401K accounts, life insurance etc. We went to a few Alzheimers' meetings, although that didn't work very well for either of us since they didn't have other early-onset cases.
We're coming up on our 2-year anniversary of the diagnosis. My husband continues to deteriorate, and is on Reminyl and Namenda. I work long hours so we can survive financially. The kids have matured early. Our oldest just went off to college in a premed field, determined to find a researcher who will let him help find a cure (even by filing or cleaning rat cages). The middle one is determined to be a doctor, and is focused on getting the grades to make that a possibility.
I have ups and downs. Somedays I feel really, really sorry for myself and for our kids, but nothing like it was that first horrible year. Sometimes I still get angry or impatient with my husband, and then feel awful. His personality has actually become more mellow, and he's somewhat childlike so I feel really bad when I want a break from him. He doesn't ask how bills are being paid, doesn't ask the kids how they did in school, or other things that he used to do - but he's still functioning and happy. He sometimes does irrational things with money that makes me nuts like buying me a custom mink coat for Christmas that can't be returned (I forgot to tell the kids not to take Dad to a furrier in my list of things not to do). Sigh. It was a gift of love. Now the kids are more attuned to his spending and monitor Dad's purchases better. A lady I work with lost her husband horribly to cancer during the last two years, and she also has teenagers. This isn't the life I wanted, but it's the one I've got. I know that he would taken care of me, and I'm gonna do this for him.
Hang in there. First get the medical diagnosis to find out what you're going to have to handle. Until you know what's going on, you can't start to deal with it. Whatever the situation is, though, it might be time to consider getting a paying job -- in the best of worlds your earnings would help with retirement or college expenses and if the worst is going to happen, you'll have a source of income.
Please let us know how it's going, or post any questions -- I hope your family gets a fixable diagnosis!!!
I recommend getting him to the Dr while he's still working and has health insurance. It might be something that is fixable, and might not be AD. He might have depression, sleep disorders, mini-strokes, a brain tumor, work stress, medication problems, etc. Don't panic yet.
My husband was 59 when diagnosed. We ended up seeing several neurologists and even went to an Alzhemiers research center since it was such a shock. He was having problems finding words, as opposed to memory problems (now he has memory loss too). We had no family history of the disease, so this came out of the blue. I would have been prepared for a cancer diagnosis or for him to have a heart attack instead of this diagnosis! I look back now, and realize that for 1-2 years before he was diagnosed that he wasn't acting the same way. His personal belongings were really cluttered, his income had dropped and he was less involved in our family. Getting him to make a decision about a restaurant became a big deal. I was getting angry since I felt like I was carrying more and more of the load. Now I realize that these were early symptoms of the disease.
Getting the diagnosis was the worst time of our lives. I look back on the first year with horror. I went around telling people that my husband had a terminal disease, since I was trying to accept the loss of our future. I made list after list, trying to put our affairs in order as if he was going to die tomorrow. Our kids all reacted in different ways, but that's another story. My husband lost his drivers' license and we went through months of trying to get it back, I learned he was driving secretly (he has stopped this), etc. He had to stop his profession, and we learned that he couldn't have income for 6 months due to disability before he would be eligible for SS disability. Getting through that 6 months was hell -- but we survived! We spent $350 for an hour of an Elder Care lawyers' time, and learned all the things that we needed to do (I kept telling the lawyer to talk faster...believe me, I got my money's worth!). Then we went to a cheaper lawyer to have the Wills, real estate transfer, power of attorney, etc. done while my husband was still competent. We changed beneficiaries on 401K accounts, life insurance etc. We went to a few Alzheimers' meetings, although that didn't work very well for either of us since they didn't have other early-onset cases.
We're coming up on our 2-year anniversary of the diagnosis. My husband continues to deteriorate, and is on Reminyl and Namenda. I work long hours so we can survive financially. The kids have matured early. Our oldest just went off to college in a premed field, determined to find a researcher who will let him help find a cure (even by filing or cleaning rat cages). The middle one is determined to be a doctor, and is focused on getting the grades to make that a possibility.
I have ups and downs. Somedays I feel really, really sorry for myself and for our kids, but nothing like it was that first horrible year. Sometimes I still get angry or impatient with my husband, and then feel awful. His personality has actually become more mellow, and he's somewhat childlike so I feel really bad when I want a break from him. He doesn't ask how bills are being paid, doesn't ask the kids how they did in school, or other things that he used to do - but he's still functioning and happy. He sometimes does irrational things with money that makes me nuts like buying me a custom mink coat for Christmas that can't be returned (I forgot to tell the kids not to take Dad to a furrier in my list of things not to do). Sigh. It was a gift of love. Now the kids are more attuned to his spending and monitor Dad's purchases better. A lady I work with lost her husband horribly to cancer during the last two years, and she also has teenagers. This isn't the life I wanted, but it's the one I've got. I know that he would taken care of me, and I'm gonna do this for him.
Hang in there. First get the medical diagnosis to find out what you're going to have to handle. Until you know what's going on, you can't start to deal with it. Whatever the situation is, though, it might be time to consider getting a paying job -- in the best of worlds your earnings would help with retirement or college expenses and if the worst is going to happen, you'll have a source of income.
Please let us know how it's going, or post any questions -- I hope your family gets a fixable diagnosis!!!
ToBeFreeToRoam
09-15-2005, 02:28 AM
Hi Beginning,
You really have your hands full. It is understandable that you have not been on this board for a month or 2. Teenagers and a husband with alzheimers!
Do the Reminyl and Namenda work? That is the next step for my father, if his dr. thinks it would work. But his new upped dose of Aricept (10mg) is helping some at the moment!
What is a real estate transfer, and why do you need to do that? Did the elder lawyer help with anything else, besides the legal work that you listed? We are still working on our parents to get them to go to a lawyer. They are really being stubborn about that!
Get lots of rest and do some things for yourself. Take care. Love, Wannabe
You really have your hands full. It is understandable that you have not been on this board for a month or 2. Teenagers and a husband with alzheimers!
Do the Reminyl and Namenda work? That is the next step for my father, if his dr. thinks it would work. But his new upped dose of Aricept (10mg) is helping some at the moment!
What is a real estate transfer, and why do you need to do that? Did the elder lawyer help with anything else, besides the legal work that you listed? We are still working on our parents to get them to go to a lawyer. They are really being stubborn about that!
Get lots of rest and do some things for yourself. Take care. Love, Wannabe
Beginning
09-15-2005, 12:39 PM
ToBeFreetoRoam (ooooh, I like that name!): My husband has said that he thinks the Reminyl and Namenda do help. He switched from Aricept to Reminyl since he was so nauseaus with Aricept after some of the patients in the AD Group said that they felt clearer with Reminyl. He had some nausea & intestinal problems with the Reminyl, but not as bad as with the Aricept. He's only added the Namenda for about 3 months. He says he thinks that some of the fog has lifted, but frankly I don't see any positive change. He's still losing speech and memory on a fairly steady but slow decline, with bigger declines whenever he's under stress or when he's out of the home (for ex., after vacation) when his routine is disrupted. I guess none of us know if these meds are working or not, but we're all too afraid to stop them in case there is any benefit.
For the real estate transfer, we moved the house & other assets into my name alone. I then made a will leaving everything to our kids. This wasn't the best way to handle things, since in our state my husband (or Medicare on his behalf) can take a large share of my estate if I don't leave my husband enough. I thought that I'd have time to get things organized when things settled down, and didn't want to worry about whether or not my husband would be competent enough to do transfers in the future even though the look-back rules will apply to my transfers too. We also have a family predator (I mean family member, slip of the keyboard) who we knew would try to get money/stuff from my husband during his illness so we needed to protect our kids if something happened to me. Based on the postings on this board, I guess that's not unusual.
The Power of Attorney was critical. Under HIPPA, doctors won't release info even to loving family members. Geez, I couldn't even get my 18-yr old's immunization records for college -- not to mention not being able to check his bank statement to see if I need to send him $. He has a little 18-yr old peanut brain, so I need to have access to this stuff to help him. I'm getting my kid's Power of Attorney, and I'm actually having one done (it will be kept in my safe) to give the 18-year old. Anyway, I got a lot of useful info for $350. The actual documents ended up costing another $500-$750 for both of us to make sure that everything was in order.
Most of the lawyer's advice was very state-specific. He explained the state Medicare rules for spending down assets, the look-back period for transfers of assets that would be included in a calculation of how much the family must contribute to nursing home care, what assets a spouse can keep, etc. He also explained the differences between a durable power of attorney and a health care power of attorney. We discussed the rules for qualifying for SS disability for people under 65 (I learned that SS would require my husband to take retirement benefits as soon as he qualifies, since retirement benefits are less than the disability benefits). My husband and I also made ourselves go through the hard stuff with our kids, about funeral and end of life wishes. Terry Schiavo's case made this particularly relevant, but AD is a terminal diagnosis. We faced up to it and cried together, before moving forward to take care of the practicalities. I was lucky that my husband was still able to be realistic about the future back then.
For the real estate transfer, we moved the house & other assets into my name alone. I then made a will leaving everything to our kids. This wasn't the best way to handle things, since in our state my husband (or Medicare on his behalf) can take a large share of my estate if I don't leave my husband enough. I thought that I'd have time to get things organized when things settled down, and didn't want to worry about whether or not my husband would be competent enough to do transfers in the future even though the look-back rules will apply to my transfers too. We also have a family predator (I mean family member, slip of the keyboard) who we knew would try to get money/stuff from my husband during his illness so we needed to protect our kids if something happened to me. Based on the postings on this board, I guess that's not unusual.
The Power of Attorney was critical. Under HIPPA, doctors won't release info even to loving family members. Geez, I couldn't even get my 18-yr old's immunization records for college -- not to mention not being able to check his bank statement to see if I need to send him $. He has a little 18-yr old peanut brain, so I need to have access to this stuff to help him. I'm getting my kid's Power of Attorney, and I'm actually having one done (it will be kept in my safe) to give the 18-year old. Anyway, I got a lot of useful info for $350. The actual documents ended up costing another $500-$750 for both of us to make sure that everything was in order.
Most of the lawyer's advice was very state-specific. He explained the state Medicare rules for spending down assets, the look-back period for transfers of assets that would be included in a calculation of how much the family must contribute to nursing home care, what assets a spouse can keep, etc. He also explained the differences between a durable power of attorney and a health care power of attorney. We discussed the rules for qualifying for SS disability for people under 65 (I learned that SS would require my husband to take retirement benefits as soon as he qualifies, since retirement benefits are less than the disability benefits). My husband and I also made ourselves go through the hard stuff with our kids, about funeral and end of life wishes. Terry Schiavo's case made this particularly relevant, but AD is a terminal diagnosis. We faced up to it and cried together, before moving forward to take care of the practicalities. I was lucky that my husband was still able to be realistic about the future back then.
ToBeFreeToRoam
09-16-2005, 01:27 AM
Hi there Beginning,
My name came from my desire, some time in the future, to buy a travel trailer and mostly just go all over the state of Texas! But, that will have to wait a while. Money, is one reason and then there is my 90 yr. old FIL, w/prostate cancer and a very bad heart. And my parents: my mom has dementia/alzheimers and uncontrolled diabetes and my dad has alzheimers (further along) and parkinsons. But maybe, some day...
You are correct, about not wanting to stop the meds, just in case they may still be working! I think they do help some people, for a while. And my dad is one of them. It remains to be seen, if Aricept helps my mom (she is supposed to start in a couple of weeks). I will order her pills, but she may not take them correctly! Then, the real estate transfer would not apply to me and my sister and father and mother.
That is really not a bad price, for all the advice and legal papers that you received from the elder lawyer. My mom just will not do it (the DPOA) and my dad, keeps trying to figure it out. He is/was an engineer and he has to have everthing just so, or he will not do it. My sister and I just need to figure out a new approach?!
My parents need the living wills also. But, that has been put off by them also! My husband and I need to get living wills done too.
You were very smart to do all of that legal work, early on. I just do not think we could have. They, mostly my mom, are still in denial. She and he just do not know or understand how bad they will get. But, my mom is learning (from watching and listening to my father) more everyday.
Take care and keep coming to talk. It helps me a lot to be able to come to this board and these wonderful ladies. Love, Wannabe
My name came from my desire, some time in the future, to buy a travel trailer and mostly just go all over the state of Texas! But, that will have to wait a while. Money, is one reason and then there is my 90 yr. old FIL, w/prostate cancer and a very bad heart. And my parents: my mom has dementia/alzheimers and uncontrolled diabetes and my dad has alzheimers (further along) and parkinsons. But maybe, some day...
You are correct, about not wanting to stop the meds, just in case they may still be working! I think they do help some people, for a while. And my dad is one of them. It remains to be seen, if Aricept helps my mom (she is supposed to start in a couple of weeks). I will order her pills, but she may not take them correctly! Then, the real estate transfer would not apply to me and my sister and father and mother.
That is really not a bad price, for all the advice and legal papers that you received from the elder lawyer. My mom just will not do it (the DPOA) and my dad, keeps trying to figure it out. He is/was an engineer and he has to have everthing just so, or he will not do it. My sister and I just need to figure out a new approach?!
My parents need the living wills also. But, that has been put off by them also! My husband and I need to get living wills done too.
You were very smart to do all of that legal work, early on. I just do not think we could have. They, mostly my mom, are still in denial. She and he just do not know or understand how bad they will get. But, my mom is learning (from watching and listening to my father) more everyday.
Take care and keep coming to talk. It helps me a lot to be able to come to this board and these wonderful ladies. Love, Wannabe
cyt
09-17-2005, 09:29 PM
Thanks so very much to all of you for your kind words of wisdom - I really appreciate it. My husband is still driving me and the kids crazy not remembering things we have told him. This goes on on a daily basis. Thank God he can still work! The job he is at is 2nd nature to him since he's been doing it so long - but I don't think he could handle anything new, that's for sure! I'm still looking for a job - but it's hard to find one, I have lots of experience but it's all 17 years ago. They seem to want to hire younger folks and I can't blame them, but I am getting a complex. My husband's personality change is driving me mad. I keep dreaming of the day when I can just leave. I really can't stand him anymore, that's just the truth, even if it does hurt . I haven't gotten him to a Doctor yet. I get in a Big ole' rut and don't do anything. It's easier that way. My husband talks with his mouth full of food. I've told him over and over that is rude, but he doesn't seem to remember and keeps doing it. It drives the kids up the wall. What do I do?? Has this happened to any of you all?? I thought I could ask him nicely but that didn't work . I keep reminding him about it but he persists. Is he trying to drive me crazy?? If so, he's doing a good job. Sorry to be so negative. I will hang in and keep the faith, if it kills me . God Bless all, Cindy
Martha H
09-17-2005, 09:57 PM
Dear Cindy,
If he has Alzheimer's Disease or another kind of Dementia, he is NOT trying to drive you crazy, annoy you etc. He absolutely can't help it.
This however does not make it any easier to see him misbehaving like that and ignoring all your attempts to help him.
I went through it all with my Mom. She forgot all about manners, and being nice, and clean, and polite, and not saying or doing certain things in front of others, etc etc. It was THE most difficult time of my life.
If I were you I would try to get him examined by a doctor - but the consequences of a diagnosis of AD could be very grave: no more driving, perhaps lose his job, etc.
YOU centainly need help to cope with it. Do you have a family doctor you can talk to? He or she could give you some ideas ... for example, if he is in the early stages of AD he may respond well to one of the drugs out there, and prolong his useful life by a few months (up to 18) which sounds short, but may give you 1 year and a half to adjust to the idea that pretty soon YOU are the only decision maker in the family ..you are the only responsible person, you carry the burden alone ...
God bless you and I still hope and pray he has something else!
love,
Martha
If he has Alzheimer's Disease or another kind of Dementia, he is NOT trying to drive you crazy, annoy you etc. He absolutely can't help it.
This however does not make it any easier to see him misbehaving like that and ignoring all your attempts to help him.
I went through it all with my Mom. She forgot all about manners, and being nice, and clean, and polite, and not saying or doing certain things in front of others, etc etc. It was THE most difficult time of my life.
If I were you I would try to get him examined by a doctor - but the consequences of a diagnosis of AD could be very grave: no more driving, perhaps lose his job, etc.
YOU centainly need help to cope with it. Do you have a family doctor you can talk to? He or she could give you some ideas ... for example, if he is in the early stages of AD he may respond well to one of the drugs out there, and prolong his useful life by a few months (up to 18) which sounds short, but may give you 1 year and a half to adjust to the idea that pretty soon YOU are the only decision maker in the family ..you are the only responsible person, you carry the burden alone ...
God bless you and I still hope and pray he has something else!
love,
Martha
ToBeFreeToRoam
09-18-2005, 01:49 AM
Hi Cindy,
You just have to get your husband to a doctor! You probably have heard lots of ways to trick him into going. But, if nothing else works, tell him you and the kids will leave him, if he does not go to the doctor and get all checked out! And be true to your word. You would have to be ready to do so, if he said no. If you do not have much money, move in with a friend. Or save up some (by squirreling away household $) money for a few weeks or a month! But, maybe after a few days, he would relent and go to a doctor, just to get yall back home?!
And be sure to do like Martha said. Call or go see your family dr. and tell him/her all. Doctors can be a big help. My dads doctor is great with him and with us. Very patient and talks like a person and not a doctor!
Hope you find a way to not let your husband drive you crazy! Love, Wannabe
You just have to get your husband to a doctor! You probably have heard lots of ways to trick him into going. But, if nothing else works, tell him you and the kids will leave him, if he does not go to the doctor and get all checked out! And be true to your word. You would have to be ready to do so, if he said no. If you do not have much money, move in with a friend. Or save up some (by squirreling away household $) money for a few weeks or a month! But, maybe after a few days, he would relent and go to a doctor, just to get yall back home?!
And be sure to do like Martha said. Call or go see your family dr. and tell him/her all. Doctors can be a big help. My dads doctor is great with him and with us. Very patient and talks like a person and not a doctor!
Hope you find a way to not let your husband drive you crazy! Love, Wannabe
cyt
09-19-2005, 04:55 PM
Thank you all so much for your kinds words ....I guess some days are just worse than others (esp. the weekends when he's home all the time). It's not so much the memory loss as it is the personality change. That is what is so hard to deal with. I'm a positive person most of the time and do have a strong faith - will try to hang in there and get him some help. Thank you, Blessings, Cindy
gilli77
09-21-2005, 10:13 AM
My mother was diagnosed with early onset alzheimer's disease when she turned 56. At first she was being treated for depression but after 2 years with no tangible improvements we sought other answers and this is what greeted us, that was 2 years ago. She's now 58.
If you suspect a loved one may be suffering from this disease get them checked out, the sooner a diagnosis is made the sooner a game plan can be formulated to take care of them and the rest of the family.
My mother's diagnosis has essentially killed her relationship with my father. She no longer recognizes him in person as her husband, they sometimes have to sleep in separate rooms and physical relations were one of the first casualties of the disease. I can tell you from conversations with my dad that he no longer thinks he has a wife because the woman he married is gone. I look at him and wonder why he has stuck with her and I can only assume it is because he still loves her deeply and made a promise in his wedding vows to take care of her, but we both have those days where we would like to run for the hills. At one point I feared he actually would and the only one left to care for my mom would be me.
If it is early onset alzheimer's be prepared for there to possibly be a lack of services and care available, because early onset affects such a smaller number of people it is often harder to group early onset patients together and provide services geared to thier individual situation, at least that was one issue we had.
my best advice is to see a doctor and get a diagnosis, if it is early onset, then it will probably require a commitment from everyone living in the house to pitch in and help. Our doctor told us straight up not to expect much improvement in my mother's condition even with the various drug options, Her best hope was to try and prevent a further decline for as long as possible and to the doctor's credit we had a relatively stable life for the past year and a half before the most recent slide 3 months ago.
Best of luck.
If you suspect a loved one may be suffering from this disease get them checked out, the sooner a diagnosis is made the sooner a game plan can be formulated to take care of them and the rest of the family.
My mother's diagnosis has essentially killed her relationship with my father. She no longer recognizes him in person as her husband, they sometimes have to sleep in separate rooms and physical relations were one of the first casualties of the disease. I can tell you from conversations with my dad that he no longer thinks he has a wife because the woman he married is gone. I look at him and wonder why he has stuck with her and I can only assume it is because he still loves her deeply and made a promise in his wedding vows to take care of her, but we both have those days where we would like to run for the hills. At one point I feared he actually would and the only one left to care for my mom would be me.
If it is early onset alzheimer's be prepared for there to possibly be a lack of services and care available, because early onset affects such a smaller number of people it is often harder to group early onset patients together and provide services geared to thier individual situation, at least that was one issue we had.
my best advice is to see a doctor and get a diagnosis, if it is early onset, then it will probably require a commitment from everyone living in the house to pitch in and help. Our doctor told us straight up not to expect much improvement in my mother's condition even with the various drug options, Her best hope was to try and prevent a further decline for as long as possible and to the doctor's credit we had a relatively stable life for the past year and a half before the most recent slide 3 months ago.
Best of luck.
Beginning
09-21-2005, 10:52 PM
Good advice, Gilli77. I agree about the change in marital relations. I see my husband as another responsiblity now, as much as I try to see him as the man I married. I worry that my kids will only remember the Alzheimers' Dad, and not the Dad he used to be. I know he feels insecure despite my efforts to cheer him up. He sleeps on the couch often to try to let me get a good night's rest so I can work another 12 hour day -- and somehow our loving relationship continues to turn into something else. Still loving, but not a marriage. The reasons why I'm committed to taking care of him are complicated. Partly love, partly duty & loyalty, partly to show my kids that you stick it out through good times & bad. It's hard to remember my husband as the partner he once was, but I plan on sticking it out all the way. I bet your Dad will tell you the same thing. Knowing he has your support and the help of family members must be a huge help for your Dad.
Interestingly, my husband's Mother had juvenile diabetes. A man I work with was just diagnosed with Diabetes, and his Mom died of AD. I wonder if there may be a connection? We heard about a few studies into a cholesterol link, but haven't heard about any studies looking for a diabetes connection.
Interestingly, my husband's Mother had juvenile diabetes. A man I work with was just diagnosed with Diabetes, and his Mom died of AD. I wonder if there may be a connection? We heard about a few studies into a cholesterol link, but haven't heard about any studies looking for a diabetes connection.
kindredspirit2
09-21-2005, 10:56 PM
Dear Cyt,
Please have your husband go to the doctor and have a homocysteine level check in his blood. If his B12 is low, serum folate high, and/or high homocysteine, then he needs to take B6, B12, and folic acid aka folate. Double dose for two weeks, then normal dose every day. The folic acid must be 800mcg daily. Also, go to your local Walgreens, Sam's Club, CostCo and get LiquiMax. It is 11-14 dollars for a two weeks worth of doses. It has the B6, B12 and folic acid and it has the omega oils that is fantastic for the brain. If LiquiMax doesn't seem to work, get Focus Factor. You can get a month's supply free. Anything with the brain will not show full effects until after 30 days even if you see improvement earlier. Make sure he has a routine, eats well, sleeps well, exercises well, especially walking. Music is very important as long as it is not heavy metal type junk. There is so much I can tell you. I have been taking care of my 76 yo mother who was diagnosed with dementia in Oct 1997. I didn't find out about the high homocysteine until Marh 2003. She was in the last stages and after two weeks of the vitamins, went back to moderate. It took 40 years to get to the bad stage so it will be a while to improve. Did your husband have an ulcer, take antacids, worry, or overwork? I am so glad that you are researching for him. Doctors are too busy taking care of everyone, you have to take care of yourself and your family. Please let me know if you have any questions.
Linda Sue
Please have your husband go to the doctor and have a homocysteine level check in his blood. If his B12 is low, serum folate high, and/or high homocysteine, then he needs to take B6, B12, and folic acid aka folate. Double dose for two weeks, then normal dose every day. The folic acid must be 800mcg daily. Also, go to your local Walgreens, Sam's Club, CostCo and get LiquiMax. It is 11-14 dollars for a two weeks worth of doses. It has the B6, B12 and folic acid and it has the omega oils that is fantastic for the brain. If LiquiMax doesn't seem to work, get Focus Factor. You can get a month's supply free. Anything with the brain will not show full effects until after 30 days even if you see improvement earlier. Make sure he has a routine, eats well, sleeps well, exercises well, especially walking. Music is very important as long as it is not heavy metal type junk. There is so much I can tell you. I have been taking care of my 76 yo mother who was diagnosed with dementia in Oct 1997. I didn't find out about the high homocysteine until Marh 2003. She was in the last stages and after two weeks of the vitamins, went back to moderate. It took 40 years to get to the bad stage so it will be a while to improve. Did your husband have an ulcer, take antacids, worry, or overwork? I am so glad that you are researching for him. Doctors are too busy taking care of everyone, you have to take care of yourself and your family. Please let me know if you have any questions.
Linda Sue
ciarancaitlin
09-27-2005, 03:26 PM
Hi, first let me say that I feel for you.
You have to get a diagnosis - even if it means dragging him by the collar. If it is dementia of some form, the symptoms could be being made worse by an infection (urine infections are bad for this).
I watched my Grandad die fom this, and my Gran cared from at home, and I used to think she hated him by the way she spoke to him, so you need toget him involved in a group, or day care, more for your good than his. (I also work with people with dementia, so can see this from all views).
Keep his mind active ie crosswords, reminiscing, even doumentaries on tv. Once people are diagnosed, they accept it well in most cases as they then have a reason for certain things that may be happening. Is he depressed? It sounds like he could be and may benefit from an anti depressant - this can take the edge off his symptoms too.
Good luck and let us know what happens - but please get him to the gp x
You have to get a diagnosis - even if it means dragging him by the collar. If it is dementia of some form, the symptoms could be being made worse by an infection (urine infections are bad for this).
I watched my Grandad die fom this, and my Gran cared from at home, and I used to think she hated him by the way she spoke to him, so you need toget him involved in a group, or day care, more for your good than his. (I also work with people with dementia, so can see this from all views).
Keep his mind active ie crosswords, reminiscing, even doumentaries on tv. Once people are diagnosed, they accept it well in most cases as they then have a reason for certain things that may be happening. Is he depressed? It sounds like he could be and may benefit from an anti depressant - this can take the edge off his symptoms too.
Good luck and let us know what happens - but please get him to the gp x
Beginning
09-27-2005, 07:08 PM
ClaranCaitlin: When I read your posting a light bulb went off. I wondered why hubby became so calm and accepting of his diagnosis after the initial shock wore off. I haven't wanted to ask him why he's not upset about having AD since I don't want him to be depressed or think about the disease's progression-- but I've secretly wondered how he could be so relaxed. The last paragraph of your posting made me realize that the diagnosis may have been a relief to him. I don't know how long he struggled to hide problems before he agreed to go to the doctor for a physical, but he may have been afraid of a brain tumor, losing his mind, etc. As horrible as the diagnosis was, I can now see that it may have been a relief to him to know what was going on. Thank you for posting -- it was very helpful!
ciarancaitlin
09-27-2005, 07:47 PM
Glad to be of some help - if I can help further please let me know - if I dont have answers I can refer to my training folders for info x