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Old 04-12-2009, 08:42 PM   #1
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It Finally happened...

Hi Everyone,
Some of you may remember me. I asked some questions about MRI on this board and what it would show concerning dementia. Many of you gave me wonderful informative answers.
To recap, my FIL who lives with us, is a Type 1 diabetic and has been showing signs of cognitive impairment. It took nearly a year after he moved in with us for me to convince my husband that he had to go to the doctor with him and explain the problems he was having with memory, being unable to learn new things (like using a remote). His doctor seemed somewhat interested but mostly in the fact that he hadn't gone to a foot or eye doctor in years, that he does nothing but sit in his room and vegitate. His doctor was unaware that he had stopped playing raquetball and rarely fished. That trip resulted in him going to get cataract surgery, which was needed. My FIL then proceeded to make appointments that my husband couldn't go to. Finally he had the chance to go again last November and told the doctor once again of his concerns, including how my FIL was managing his diabetes, since he was constantly taking too much insulin that was causing him to have seizures. The doctor told my husband that his father needs to take 5 units less of insulin and get an MRI for the cognitive problems. I was very frustrated by the way the doctor blew off my husband about the possible dementia symptoms, I didn't realize that he also was irritated by my husband thinking that he was blowing things out of proportion. My husband felt like an idiot for asking the questions and when I approached him, just kind of said what can I do?
Fast forward to now. Since the last time I posted to the boards in January, my father in law became sick with cold-like symptoms. He would feel really bad, glucose count would be high, and he would call in to his Dr. for a prescription which the dr would call in for him, he would start feeling a little better and two weeks later, the same thing, call the doctor, get a script feel a bit better and then sick again. People who have diabetes have very high glucose counts when they are sick and have to be careful to maintain sugar levels and eat properly. Finally after the third relapse I told my husband that he needed to make his father go to the doctor. Which he did try to get his father to do, and his father never made an appointment. Finally, I brought all kinds of printouts home to my husband about some potentially fatal problems when diabetics got sick that I thought sounded like how my FIL was starting to seem. I had called Hubby from work and told him that I had the printouts and wanted to go over some things that we really needed to talk about. While we were going over these things, FIL comes downstairs from his room looking horrendous, uses the bathroom and goes back to start up the stairs but instead sits on the bottom step. My husband asks him a few questions, and it was obvious he was very sick. Finally I just said, Jim he needs to go the hospital. He started right away telling his dad he needed to go to take him to the hospital, ok? I was like, no he is going to the hospital now! I am not good in situations like this but I put on my big girl britches and would not allow either to back down. Got my RN neighbor to come over and convince them which she did.
Well he almost died, he had diabetic Ketoacidosus and a glucose count of over 1100! He was in ICU for 24 hours and is recovering but has been telling some wild stories. We were told this could have been worsened by the medication and the extreme illness he had gone through, and he has been in the hospital for 4 days.
But the good thing is that he will finally be getting the help he needs. My husband says that he isn't giving him choices, and that he finally had enough to go back to the doctor and prove that he was right. It is obvious that my FIL wasn't aware enough to manage his diabetes and when my husband tried to get help for him. his doctor didn't believe it. Now my husband is totally committed to getting his dad a new dr that will help him and us in management, we are also going to try to get a chance to be able to find out what is going on with treatment and medicines. We found out that the medicine to fight sickness was Allegra!
I am so f***ing angry! The more my husband told me about the last Dr appt, the angrier I get. That man used his position of power to make my husband feel as though he were over reacting.
If anyone has any information on how my husband can be able to call the dr's and find out what is happening currently with tests, medications, suggestions, I would be very grateful!
Thanks for reading and sorry so long!

Love,
Lizzie
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Old 04-12-2009, 11:18 PM   #2
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Re: It Finally happened...

Lizzie

By law your husband has a right to get a copy of each test result that the doctor gets. He needs to find a new doctor and he is allowed -- again by law to get the medical records of the one doctor transferred to the other. Either they do it or you can pick the file up and take it to the new doctor. Sometimes when you get copies of the entire medical file from the doctor and even the hospitals -- there's a charge.

My husband was very sick. I got a binder. In the binder was every business card from every doctor he was seeing. Once a month, we went though all the medicines he was taking; dosage, how often, what it was and then I went to the websites and got the drug information -- counter-actions, what food it can be taken with, etc. I printed all this out and it was in the binder. Every doctor visit was marked on a calendar. Any changes made to the medication was noted. I carried this binder with me during each medical crisis and hospital ER visit, etc.

Its a part-time job. Yes, it takes over your life -- but if you step up to the need, you take the responsibility.

YOU my girl seem to just tell hubby what he needs to do -- where are you in this picture -- on the sidelines? While you say you don't want to get involved, honey you are involved all the way. Please don't put all this on the shoulders of one person, I was that one-person and I so much needed someone to support me while I supported my husband. I didn't need someone Monday-morning quarterbacking everything that was being done.

But as I said, your husband has the rights to the medical reports, etc. Especially the blood work that must be done very frequently. If he's living with you and you are cooking, etc. You must sit in on diabetic seminars, etc. and realize that there's a lot of changes that must occur with the family and their diets.

Its really important that this detailed learning be done -- diabetes is a family trait and your husband has an opportunity to possibly have it already or will get it sometime in the future.

CaringSister54

Last edited by caringsister54; 04-12-2009 at 11:19 PM.

 
Old 04-12-2009, 11:57 PM   #3
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Re: It Finally happened...

It is the same here. You have the right to obtain all of your medical records. You might have to pay a nominal fee for xeroxing but they can't refuse to give you the reports and records. I had one doctor that didn't want to give me mine but when I insisted he charged me a nickle a page to copy them.

As for the doctor.... GET A NEW ONE!!! There is nothing that binds you to the current doctor if you don't trust him. Your husband and yourself are your FIL's best advocate. You have to do what is right for him. Doctor's are human. There are good ones and not so good ones. Find yourself a good one!!

By being married you are involved. Your FIL deserves the best care he can receive. You might be interested to know that Allegra D may cause an increase in blood glucose levels. It is not something that should routinely be given to diabetics and if it is then BS levels should be checked more frequently to determine if it is causing a problem. It also can cause an increase in blood pressure. Yep, they had my Mom on Allegra and Metforman for glucose levels.... makes lots of sense huh?

Information is your best armour. The more you know the better you will be able to monitor your FIL's condition. You are absolutely right to research, print, and investigate. I did the same thing with mom and her namenda/aricept combination. She has been off both for a few weeks and she is so much better

SO keep doing what you are doing. Request the information you need from the doctor. If necessary let him know that you understand that you are entitled to that information and you will get it. If he refuses.... contact the American Medical Association AMA. Do a web search on AMA and there is a contact button. They will be able to help you

BTW... those big girl panties fit you well!!!

Love, deb

 
Old 04-13-2009, 08:47 AM   #4
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Re: It Finally happened...

Thanks for getting back to me. I do appreciate it, Deb and Caringsister. Now here is the thing with getting involved. I really don't know how to. I feel as though I am intruding. I suppose I could make his food and take over some Dr appts with him, I really don't mind at all. I just don't want to be told that its none of my business (not that I have, I just worry about it) Truthfully, I feel as though I would be better at getting the answers we need than he is. My FIL is a very stubborn man, but he does listen to my husband. The Endocrinologist that he was seeing in the hospital said that he may have vascular dementia, but testing would need to be done. He also said that the MRI that had been done would be a base MRI, future MRI's would be able to tell if there is differences, so the dr was wrong about that too.
I love your binder idea. We do write down Dr appts which are few and far between, although that is changing. The new Doc said he would give us detailed instructions for his care. It is such a relief.
Really ladies, I have been feeling like I had my hands tied behind my back. This is the only place I have been able to turn. I have known that he has needed help for almost 3 years, and it has taken him to nearly die for everyone to pay attention.
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Old 04-13-2009, 08:55 AM   #5
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Re: It Finally happened...

By being married you are involved. Your FIL deserves the best care he can receive. You might be interested to know that Allegra D may cause an increase in blood glucose levels. It is not something that should routinely be given to diabetics and if it is then BS levels should be checked more frequently to determine if it is causing a problem. It also can cause an increase in blood pressure. Yep, they had my Mom on Allegra and Metforman for glucose levels.... makes lots of sense huh?

Information is your best armour. The more you know the better you will be able to monitor your FIL's condition. You are absolutely right to research, print, and investigate. I did the same thing with mom and her namenda/aricept combination. She has been off both for a few weeks and she is so much better

SO keep doing what you are doing. Request the information you need from the doctor. If necessary let him know that you understand that you are entitled to that information and you will get it. If he refuses.... contact the American Medical Association AMA. Do a web search on AMA and there is a contact button. They will be able to help you

BTW... those big girl panties fit you well!!!

Love, deb[/QUOTE]

Thanks Deb, of course I didnt' know that allegra could raise blood glucose! I really do not like that Dr. but he has been going to him for 30 years and I know he doesn't want to change. What we plan on doing is insisting on the new Endocrinologist and letting him see his old Dr if he wants. My husband and I will no longer consider anything that he has to say though. I will talk to my husband about the role he would like me to play in all this. I keep telling him that he has to do this and that, and I know it irritates him, but if I am allowed to do this for him, I would be more than happy to help.

Love,
Lizzie
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Old 04-13-2009, 11:11 PM   #6
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Re: It Finally happened...

The responsibility truly does lie with your husband for his father but as I said, by virtue of being married you are involved. It is a good idea to talk to your husband about what he expects and wishes from you. That will give you a better idea what you should and could do for him. Be sure to let him know what you are willing to do as well. Communication is the way to go.

But when you see something that is just not right you need to step in and express your concerns. Sometimes you have to just keep saying it but for your FIL's well being you have to be persistent. I have done that for Mom and Dad and the results were more than I expected. Sometimes you just have to put on the big girls panties and step up. You seem to have done that and it turned out well Follow your gut feelings... they are there for a reason.

Love, deb

 
Old 04-14-2009, 05:07 AM   #7
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caringsister54 HB Usercaringsister54 HB Usercaringsister54 HB Usercaringsister54 HB Usercaringsister54 HB User
Re: It Finally happened...

Its a balancing act. While you hesitate to 'jump' into it, being not sure whether its wanted by husband or not -- its also needs to be stated that you can't let hubby dump it all on you because of your willing to be involved.

Sometimes our wonderful men in our lives are like "oh, good, you're going to do . . ., and they turn off or stay away".

You must let your husband know that because of your love for him and his Dad, it will have to be an equal partnership of support and love going forward.

AND if he has siblings(?) they should also be pulled into Dad's doctor appts and care. Even if they take him a weekend, every other month so you and hubby can reconnect as a couple.

This will put a drain on any marriage or sibling relationship. Believe me.

Love CaringSister54

 
Old 04-15-2009, 06:47 PM   #8
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Re: It Finally happened...

Quote:
Originally Posted by DGabriel10 View Post
The responsibility truly does lie with your husband for his father but as I said, by virtue of being married you are involved. It is a good idea to talk to your husband about what he expects and wishes from you. That will give you a better idea what you should and could do for him. Be sure to let him know what you are willing to do as well. Communication is the way to go.

But when you see something that is just not right you need to step in and express your concerns. Sometimes you have to just keep saying it but for your FIL's well being you have to be persistent. I have done that for Mom and Dad and the results were more than I expected. Sometimes you just have to put on the big girls panties and step up. You seem to have done that and it turned out well Follow your gut feelings... they are there for a reason.

Love, deb
Communication, eh? Guess that might work! But seriously, he gets very defensive when I talk to him about his dad. I think that he thinks that I am badgering him. So now when he gets defensive, I try to explain that I am trying to help or run things by him. I think he will be coming around and understand what I am doing. He is much more determined to get him on the right track. Yesterday, FIL's first day without us (my 12 year old daughter was here though), he forgot to take all his pills and almost took the wrong insulin. So he asked me to put out a glass of water and his pills in the morning. So that was nice, he normally won't ask me to do anything. I am not sure how they figured out the insulin. But it went very well. We have to watch everything he eats or he will eat too much and the wrong thing. I bought loads of veggies and fruit and whole grain foods and fish. FIL is trying to eat the good stuff.
We are trying, thanks for your help!
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Old 04-15-2009, 07:05 PM   #9
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Re: It Finally happened...

Keep trying Lizzie. Old patterns die hard. Eventually hubby will realize that you are trying to help and have no intentions of taking over. So keep the communication flowing. Eventually he will catch on

We tried putting Mom and Dad's pills in a daily pill box. That did work for a while but then they would get confused and take each other's pills or take two days instead of one. The caregiver finally started putting them on their meal plates. We still found that they were going back to the bottles and getting more. So we had to hid the pills. Medication is a BIG concern with dementia.

Love, deb

 
Old 04-15-2009, 07:24 PM   #10
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Re: It Finally happened...

Quote:
Originally Posted by caringsister54 View Post
Its a balancing act. While you hesitate to 'jump' into it, being not sure whether its wanted by husband or not -- its also needs to be stated that you can't let hubby dump it all on you because of your willing to be involved.

Sometimes our wonderful men in our lives are like "oh, good, you're going to do . . ., and they turn off or stay away".

You must let your husband know that because of your love for him and his Dad, it will have to be an equal partnership of support and love going forward.

AND if he has siblings(?) they should also be pulled into Dad's doctor appts and care. Even if they take him a weekend, every other month so you and hubby can reconnect as a couple.

This will put a drain on any marriage or sibling relationship. Believe me.

Love CaringSister54
My husband has one sister who broke her right foot and can't drive, so that isn't helping. I can't see her taking him for a weekend, she can barely take care of herself and I think she would be very scared if something happened. Right now FIL has enough mental power to be ok most of the time. We need to adjust somewhat and write things down for him, but in general he isn't too bad.
We have been so stressed and running around between him and my youngest daughter who is a full year cheerleader. I have to say he did pick the right weekend to lose it, no competitions! Besides that, my mom had double knee replacement yesterday, and I forgot all about it! I called her on Monday night since it was the first time I could even think, and I had a totally different day that I thought she was having this done! So, now that I got out of the hospital for one day (Monday) I am back in the hospital with mom. So far, she hasn't been seeing any little people (that happened when she broke her hip). Now this weekend, one of my dogs is having a litter ( I show and breed Cavalier King Charles Spaniels), my daughter has a two day competition in Baltimore, and I have to go with her! Thank God my husband is really good at birthing babies!

Love, Lizzie
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Old 04-15-2009, 07:32 PM   #11
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Re: It Finally happened...

Quote:
Originally Posted by DGabriel10 View Post
Keep trying Lizzie. Old patterns die hard. Eventually hubby will realize that you are trying to help and have no intentions of taking over. So keep the communication flowing. Eventually he will catch on

We tried putting Mom and Dad's pills in a daily pill box. That did work for a while but then they would get confused and take each other's pills or take two days instead of one. The caregiver finally started putting them on their meal plates. We still found that they were going back to the bottles and getting more. So we had to hid the pills. Medication is a BIG concern with dementia.

Love, deb
Ok, I am thanking God that I don't have the double whammy you have, mom AND dad! My husband is planning on retraining his dad, I told him its a great idea but don't expect too much. He knows

Love, Lizzie
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Old 04-15-2009, 07:42 PM   #12
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Re: It Finally happened...

Uhhhh.... retraining Dad?!?! I think not. If he truly has dementia he is incapable of learning. The quicker hubby figures it out the better. He needs some reading material on dementia. Let us know how it goes lizzie

Love, deb

 
Old 04-15-2009, 08:08 PM   #13
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Re: It Finally happened...

[QUOTE=DGabriel10;3957247]Uhhhh.... retraining Dad?!?! I think not. If he truly has dementia he is incapable of learning. The quicker hubby figures it out the better. He needs some reading material on dementia. Let us know how it goes lizzie

Love, deb[/QUOTE


Shhhhhh....! Don't tell him! Baby steps, Deb, baby steps. I told him not to expect too much! Thank God one of us reads!

Love,
Lizzie
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Old 04-16-2009, 12:00 AM   #14
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Re: It Finally happened...

Lizzie, you are AOK. I like the free spirit wild child in you!!

Love, deb

 
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