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Old 08-21-2011, 10:55 AM   #1
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advice please

We have an appointment on wed 24th aug with my husband consultant to let us know if he has alzheimers or dementia,im really affraid of what he will be telling us.Could someone please tell us what questions would we need to ask,we are not used to this and my head is all over the place.

I would really appreciate some advice and questions please on this

ann

 
Old 08-21-2011, 11:48 AM   #2
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Re: advice please

Quote:
Originally Posted by ann1970 View Post
We have an appointment on wed 24th aug with my husband consultant to let us know if he has alzheimers or dementia,im really affraid of what he will be telling us.Could someone please tell us what questions would we need to ask,we are not used to this and my head is all over the place.

I would really appreciate some advice and questions please on this

ann
It depends on what kind of consultant you are talking about. I assume the person is a physician. Is the person a family doctor? A specialist like neurologist? A psychiatrist?

Anyway, if the specialist diagnoses him with dementia of any type (Alzheimer's or vascular dementia), he is more likely to prescribe some med for dementia. The drug may be aricept, namenda, exelon and etc. The person may also tell you what stage roughly and says that he needs a controlled environment. The person won't bother with caregiving because it is not the doctor's job.

My FIL's diagnosis Alzheimer's was told by the psychiatrist from the behavior test center. The doctor suggested that he needs a controlled environment. The stage was roughly early but it was in fact moderate (because my FIL lied to him about when he took a shower.)

However, the doctor cannot help us with caregiving. So we had to hire a caregiver to be with my FIL because we are out of country. Now he is in a residential home.

The family doctor was able to tell us when my FIL needs 24 hour care or when he needs to go to a nursing home or an assisted living facility. The main work of caregiving is done by the family.

I sure hope your Dad may not have dementia. You also need to prepare to take care of him for a long time.
If it is dementia, I suggest that you get a geriatric manager who is a nurse so she or he will tell you how to handle the caregiving.

Good luck,
Nina

Last edited by ninamarc; 08-21-2011 at 11:55 AM.

 
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Old 08-21-2011, 12:07 PM   #3
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Re: advice please

nina its my husband that we think has it,not my dad. The consultant is a dr at the hospital which we have been attending.
Could u tell me what questions i would need to ask him

thanks
ann

 
Old 08-21-2011, 12:17 PM   #4
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Re: advice please

Quote:
Originally Posted by ann1970 View Post
nina its my husband that we think has it,not my dad. The consultant is a dr at the hospital which we have been attending.
Could u tell me what questions i would need to ask him

thanks
ann
Sorry, I got confused with many posts... I sure hope your husband does not have dementia...

It depends on the doctor. Is it a family doctor? Is he a specialist?
It makes a difference. The family doctor (we call them GP here) does manage the patients in the long term. The specialist only sees you once probably. My FIL never saw another neurologist/psychiatrist again...

I guess the question to ask is to confirm the diagnosis. Ask the person how he/she did the test and what stage it is... If he prescribes the med, ask him what side effects and how long he would need to take it. How should he take the med and etc.

If it is not dementia, ask him what is the next step and what is it and etc...

Like I said, in terms of caregiving, you need to find someone who knows about dementia in the home care area.
You may ask him to recommend the home care or any professional caregivers..

Hugs,
Nina

Last edited by ninamarc; 08-21-2011 at 12:19 PM.

 
Old 08-21-2011, 04:59 PM   #5
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Re: advice please

I don't have a lot of suggestions for you, Ann. Our doctors gave us the diagnosis and then said we didn't need to come back unless we wanted an annual appointment to see how much my husband had deteriorated each year against their average patients. They didn't have much to offer, so they pretty much wrote him off immediately. The doctors began to talk to me, and ignored him even though DH was still in an early stage. He became a "nonperson." Either they ignored him, or they spoke loudly and slowly as if he were deaf.

They refused to give us a prognosis or to tell us "how long," since they said every patient is different. KenBob's wife passed relatively quickly, and DH is still ticking along after 9 years...I guess they were right, but it's hard to plan life when you're waiting for death. Recently DH has had a resurgance and is in his 2nd week of talking again (also back to temper tantrums and other behaviors that he had done a year ago). This is DH's first "improvement" after a steady decline with periodic dips, so it's really surprised us.

Our initial doctors didn't even tell us that they had notified the Department of Transportation to suspend his license. I guess they wanted to avoid a battle, so our first notice was when the letter came from our State. It seemed as if once they gave us the diagnosis and a prescription for Aricept, they had nothing else to offer. They didn't even warn us about the side effects of Aricept - DH encountered them, and I got questions answered by the pharmacist and here on the board.

I'm sure other people have had better experiences.

We only had one neurologist who gave us some good ideas (I asked what medical suggestions he had for us). He referred us to a national Alzheimers' research center, which we visited annually until DH's condition deteriorated too much. The research center had much more practical expertise in the disease, and was able to give us suggestions at each stage. For example, they were the ones who suggested the big whiteboard (calendar), avoiding crowds and lots of noise, and that sticking to routines would help extend his functioning longer. I would ask the consultant if he can point you at resources for dementia patients to get you started.

I would also ask him to refer you to a second opinion. This diagnosis is so devastating that your family deserves to be 100% certain.

We got very good advice from our elder lawyer, who had seen it all before. The advice we got from the elder lawyer was actually better than the advice we got from the doctors. Doing the wills, preparing for alternative guardianship of the kids, transferring the house and cars only into your name, getting powers of attorney in place, and preparing the living wills were all critical. In our country, we got advice about qualifying for disability payments since DH was unable to continue working almost immediately. Hard as it was, DH and I also had conversations about DH's final wishes. He was able to tell other family members. (I hope they remember, and that nobody criticizes me since DH wanted a quick cremation and no funeral.)

There are excellent books out there about the disease, such as Alzheimers for Dummies and the 36 Hour Day, both of which are available on Amazon or from other booksellers. Keep in mind that it takes about 2+ years for books to be written, published and distributed, so they won't be absolutely current. The Alzheimers Association is a source of the latest research information.

Last edited by Beginning; 08-21-2011 at 05:02 PM.

 
Old 08-21-2011, 05:39 PM   #6
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Re: advice please

Ann
I believe you are in Ireland. I am not sure if you have an alzheimers association there. It is a very anxious time when you are going through this and I feel for you. Maybe you could do some reserch on your computer to find out more information about what you should ask the consultant. Maybe it will be something other than alzheimers or dementia. I hope you have a very understanding doctor who can help you understand what lies ahead. My best wishes for a good out come. Keep us posted. My mother has vascular dementia and has been affected over ten years. She is in a nursing home with sitters daily and under the care of Hospice. She will turn 91 in October and so has had a very long life. Her circulation is very poor and she sleeps a lot. It has been a long road and no one really knows when the end will come. You find strenght as you go one day at a time.
Maybe your husband has some problem that can be corrected by the doctor. Keep posting to let us know what you find out. This is a great support group and you can vent your feelings here anytime.

Gail

 
Old 08-21-2011, 05:54 PM   #7
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Re: advice please

Ann, my experience is much like Beginnings. Mom's family physician gave her the MMSE, put a mild dementia label on her and told us to come back in a year. It was obvious that he was not quiet right. I was lucky enough to find out about the Memory Assessment Research Service (MARS) that was attached to a local university psych department. They are actually doing research on early diagnosis of Alzheimer's. Mom was diagnosed there. I have an extensive report which includes each types of cognition, which ones she had deficits in, and which were still functional. It also told us that she was not mild dementia but moderate to sever dementia consistent with Alzheimer's. Because of the advanced state of her diagnosis they did not recommend the "memory" drugs... but her family doctor decided to prescribe them. Like Beginning's DH, Mom had all the bad side effects. MARS was who eventually took Mom's license on our second evaluation visit. I have found that many doctors don't have a clue about Alzheimer's/dementia. If this physician is not a geriatric or dementia specialist please ask for a referral to somebody that does specialize. You would go to an oncologist for cancer and you need to go to a geriatric dementia specialist (be it a psychologist or neurologist) for dementia.

They will not give you an estimated longevity. They can not tell you what pattern the disease will take. They can not tell you what to expect because that is not the nature of the disease. Expect the unexpected is the best advice I received. You should ask them what level he is now. You can ask them if there is a Memory Assessment Research Clinic or Service in your area. Most of what you will learn is from books and boards like this... sad to say.

Just know, if it is in the early stages, that you may have more good years ahead of you. Take a word of advice that I learned. Don't look back at what was and don't look forward to what should have been. Try to stay in the moment and take the best out of the moment. It's not easy but if that is your goal then it will make life a little easier.

Along with the books Beginning mentioned you might want to also read "Coping with Alzheimer's.... A Caregiver's Emotional Survival Guide" by Rose Oliver and Frances A Bock. It is the first book I have found that talks about the emotional well being of the caregiver. There are many good books on how to care for your loved one but this one will be for you and how you cope with the roll of caregiver.

One question I would ask is about his ability to drive. That is a huge hurdle that will come your way and you need to know when it is time to become his chauffeur. Beyond that ask for a stage of the disease and if they can give you any perspective on what to expect. Then go home and do all the research you can. Soon you will know more than the "experts"

Stay with us... It is a long road and many of us are on the journey with you. This is a great place to vent, learn, and share. I hope and pray that this is not his diagnosis but if it is know you have a family here.

Love, deb

 
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