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Old 12-26-2007, 07:19 PM   #1
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Neurologist office messed up appt schedule...

My husband's 1 year neurology appt. was supposed to be last week. It was scheduled at his appt. last year. I didn't think much about not getting a reminder call until the day of the appt. Since it is about a 45 min. drive, I called before we left just to confirm - and found that for some reason his appt. was bumped and he was put on a "reschedule list" with no notice to us. They said we should have received a letter or call. We didn't. When she looked for the next available appt., she gave me a date in JUNE. I was a bit shocked and said as nicely as I could that I would note that date, but that I hoped they could get him in sooner since he HAD an appt. and we had not been notified of any change. She said they would try.

I am trying not to be upset about this - since his progression of symptoms is slow and there probably isn't any urgency. I just was expecting to get updated neuropsych tests that would help quantify where he is now vs. 2 years ago. and it's frustrating to have a 6 month wait.

The things I've noticed new this year are difficulty with facial recognition (mostly with distinguishing between characters on TV shows - and with recognizing someone he met recently) and difficulty with any kind of "multi-tasking". I re-read the report from 2005 and the tests that did show impairment were ones that addressed those aspects. I would be interested in knowing how much the level of impairment changed - and whether any of the other issues (short term memory, word finding, etc.) are now showing up as impaired in the clinical test assessments.

Another change is that he no longer remembers things with prompting - and is beginning to be a little paranoid that I am "playing with him". I recently broke my arm and gave him my jewelry to hold since my hand was swelling up. When we got home from the hospital, I asked him for my jewelry and he got into his jeans pocket to retrieve them for me. The next day he was panicking a little because they weren't in his pocket. He asked me if I had gotten into his closet and gotten them out. I said no and reminded him that I had asked for them and he had gotten them for me. He just cannot believe that happened. There have been other similiar things and he will argue a bit and then (kiddingly?) accuse me of trying to make him think he is crazy. At this point, they haven't been important things - but I can see how the paranoia develops as they can't remember things and don't believe others versions of events - and I can also see that I will soon need to just agree to avoid upsetting him. (Oh yes, honey, I did get my jewelry out of your pants...).

Long story to say, I have no official medical update to report on hubby and probably won't for another 6 - 8 months. I just hope the changes remain slow.

You are all in my prayers. I know most of the message board members have family members who are much further along in the stages. My heart goes out to you. N2E

 
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Old 12-26-2007, 09:13 PM   #2
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Re: Neurologist office messed up appt schedule...

Wow N2E... I know you are trying to keep your composure on this appointment mix up but I also understand that it is very annoying to expect an update and then get nothing for months. We think we know what we see but it is nice to have verification and validation of what we already know is there. I think we have all been where you are. I remember waiting for Mom's second evaluation. That is the point I realized just how much her intellegence was covering her inabilities.... and just how impaired she had become. Hang in there. Time will slip by quickly and you will get your answers. Hopefully they will have a cancellation that will give you an appointment sooner. In the mean time just keep doing what you are doing.

I will keep you both in my thoughts and prayers....

Love, Deb

 
Old 12-27-2007, 04:56 AM   #3
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Re: Neurologist office messed up appt schedule...

That sounds incredibly frustrating. His symptoms are starting to sound more like my DH's symptoms the first year or two -- I had quite a few "pocket" incidents with DH too!

You might try call them every week to see if they have cancellation appointments, and telling him that his condition is deteriorating. You might also ask your Internist to make a call to see if he can get in sooner, since the specialists are often willing to extend professional courtesies. Geez, by June you'd be able to get into another doctor and have his records transferred! I'd let the Doctor know when you see him since he may not know what his scheduling Nurses are doing.

 
Old 02-25-2008, 05:40 PM   #4
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Re: Neurologist office messed up appt schedule...

Hi Everyone....I just joined tonight and was looking for someone to connect with who is in a similar situation. My husband (an engineer) was diagnosed with Mild Cognitive Impairment almost 2 years ago. His neurologist is reluctant to label Alzheimer's though I think that may happen at this appt in a few weeks (I believe for insurance reasons and my husband's refusal to accept). He is taking 16mg of RazadyneER and it has helped, but as you all know, it doesn't last forever. He has one of the genetic markers for Alzheimers, previous severe brain trauma, heart attack with open heart surgery 13 years ago. He only recently had to stop work because of confusion and inability to complete tasks.

I'm 59 years old and feel like I've been a caregiver for the last 10 years. I know I'm having a pity-party today but they are getting more frequent. My husband is still socially active, able to drive, but some days (especially in the beginning) it's like "ground-hog day" every day. We have the same conversations, same repetitive questions. He mostly talks only about himself and so there is no sharing. Have I already lost my friend? I changed my working hours so I'm home 2 days a week (but really need the other 3 out of the house). Why do I feel that it might be me who is really losing their mind? I thought his long recovery after his heart attack (when I was 46) was a major change in our life. I feel so selfish wondering if I'm destined to many more years of living with someone but really being alone.

I've read posts tonight from several of you who talk about various solutions from "leaving" to family/friend support. How brave that you can even make a decision! I think my writing is fragmented as I really don't know where to begin all my thoughts/frustrations. Most importantly...how do I help him lead the most fulfilling life possible??????? Thank you for listening.

 
Old 02-25-2008, 09:32 PM   #5
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Re: Neurologist office messed up appt schedule...

First let me say welcome to the board Harlow. This is an amazing group. I also want to say how sorry I am that you are having to deal with this horrible disease.

Pitty parties are allowed. We all have them. I have definitely had my share. Being a caregiver is probably the most difficult job there is. You do it all for someone that doesn't even realize they need the help and has no idea what you are doing for them. They swear they are fine and there is something wrong with you. It is losing the best friend, husband, Mom, Dad with them sitting right there beside you.

The first suggestion I have is to be sure you have a durable power of attorney from your husband while he is still able to give you that. It might not seem important now but later on it will be the most valuable document you have.

Be very careful of him driving. If he is repeating conversations over and over then he has enough impairment to impair his driving ability. He may seem to function ok with normal driving but in a stressful situation he will not be able to react adequately. This is something you need to talk to his neurologist about.

Find things that he has always enjoyed doing and see if you can continue those activities. He will have difficulties learning something new. My Mom, who has Alzeimer's, and Dad, who has vascular dementia, play checkers. They both knew how to play as children and have so far retained the ability to play. Mom likes watching the news, Opray, and Dr Phil. She doesn't remember what they say most of the time but she seems to enjoy it. Dad reads the paper.... five or ten times a day. It sounds silly to us but they enjoy what they are doing. Mom and Dad enjoy visits from friends and family. Socializing with others, even if it is not remembered, leaves them with a good feeling and gives them pleasure at the moment it is happening. So look for things he had done before and see if you can find something you can do together or with others. Alzheimer's is truly a roller coaster and what works today will not work tomorrow but might work again next week. If one thing doesn't work then try something else. There are no right or wrong answers, just good hearted attempts.

Keep typing. So many here helped me when I was where you are and I am sure they have ideas that will help. Venting your frustrations is also a good thing. Everybody here has been or is where you are. Having people around that truly understand in itself is beneficial.

Know I keep you and your husband in my thoughts and prayers...

Love, deb

 
Old 02-26-2008, 03:26 AM   #6
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Re: Neurologist office messed up appt schedule...

My thoughts and prayers are with you too, Harlow. You are in a nightmare. In my case it was my very elderly mother, but I cannot imagine your life when your husband becomes irrational.

I suggest that you drive when you are together, and see if other arrangements can be made to get him to work. He will resist - this mind impairment makes them think they are just fine, and everyone else is acting irrational all of a sudden.

I wonder if your husband takes or took statin pills for his heart trouble. My Mom's dementia came on after a hospital stay for heart failure and then being put on statins.

Please go to the doctor with him, and hand a list of questions and observed behaviors to the doctor or nurse beforehand. We don't want our loved one to feel bad so we don't say in their presence "every day seems like something out of the movie Groundhog Day." But the doctor will get a very clear picutre by seeing this in writing.

Good luck! I came here many times in such frustration that al I could do was scream and cry. The people here helped me to get though it. The ultimate solution is a good nursing home. But that is a way off in your case. God bless you.

I wouldn't stay home either. I needed my job at that time - it kept me sane! Eventually we got a Home Health Aide to stay with Mom when I was out of the house.

Love,

Martha

Last edited by Martha H; 02-26-2008 at 03:27 AM.

 
Old 02-26-2008, 06:43 AM   #7
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Re: Neurologist office messed up appt schedule...

Deb, thanks for the warm welcome to the group and the wise words of someone who's been there. I should have also said how fortunate I am that my husband's love for music and playing his trumpet have become his obsession. He continues to play as a regular member of two community bands twice a week. Recently he was also part of a third music band but when it re-organized was told that he had been replaced due to "not keeping up with the music". This devastated him but he turned it around to jealousy on the part of the band director. I should also state that none of his "music" friends know of his diagnosis. We (my husband and I) kid around about his memory/focus issues by saying he "has a doctor's note". I want to keep him smiling about this horrible turn of events and so we joke often.

I will definitely look into the Power of Attorney. This will cause a huge argument because he will deny it as being necessary. It took me all of the first year to get him to agree to see a financial counselor. We finally did but I pay the price in listening to how it was a big mistake to do this. It wasn't, of course, because it gave me peace of mind on at least this issue.

Do you have moments when things are going well (a good day) and you wonder if this is really Alzheimers and perhaps you yourself are becoming paranoid???? I hate this doubting of myself more than anything. Enough for now and thanks again.........Harlow

 
Old 02-26-2008, 08:16 AM   #8
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Re: Neurologist office messed up appt schedule...

I had many such moments - thought I was getting dementia! This was reinforced by my far away sister who blamed all of Mom's symptoms on me .. but refused to take over Mom's care.

You can go to a notary and get POA for EACH OTHER. You will not be declaring him ill, just making sure that in the future you can make the important decisons that will have to be made.

Once you get those documents, you must remove the one giving him POA over you from his reach - just in case he uses it in some bizarre way later on, like taking out all your funds and buying a white elephant ....

Humor is great, and so is music - my Mom sang and played her harmonica --- not at the same time --- until a couple of months before her death, and got great pleasure from it.

Martha

Last edited by Martha H; 02-26-2008 at 08:17 AM.

 
Old 02-26-2008, 08:23 AM   #9
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Re: Neurologist office messed up appt schedule...

On the POA (Power of Attorney) you can tell him that it is recommended for all older couples to have along with a will and medical directive. This is TRUE! Have all of these done on both of you. A POA is not activiated until it is registered which you can do with his at a later time. That way it is not about him but about both of you. Then you keep the documents in a safe place away from him and you can change yours to another person.

Bless the power of Music. What a wonderful obcession. At some point you might want to let some of his Music friends know what is going on with him. It might make a difference in how long he is able to play with a group if they understand his inabilities. If they understand what is going on they can help you keep him active.

Humor is essential. My Dad has a great sense of humor and we joke around and laugh a lot. Mom has depression with her Alzheimer and it is more difficult to get her laughing and joking but I do drag her there if possible. Laughter releases endorphins which gives us a natural high. It is good that you and your husband can still find humor.

Again, he doesn't have a clue just how bad he is. He thinks he is just fine and the problems belong to everybody else. This is why he blamed the director for his inabilities and why he probably blames you for thing that he does. There is no need to agrue with him because he believes what he is saying just as firmly as you believe you know your name.

You are still in that twilight zone where your husband can be bizzare at one moment and almost normal at another. The heart doesn't want to accept what the brain knows so at those moment when life is almost normal if is natural to question the bizzare. But the head knows the truth and the heart will listen. Just cherish the good moments while you have them.

love, deb

 
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