Denial - Alzheimer's Disease & Dementia Message Board

Kaylynne · 11-28-2003, 04:24 PM

Hello all. My mother was just diagnosed with Alzheimer's (or so her doctor says). What makes me so mad is that in the last year the doctor only referred to it as dementia and AD was never mentioned. Am I just stupid or what? Is dementia the "early" stages of AD? I am very new to this and so confused.

My mother's short-term memory of late has been horrible. She couldn't remember my birthday but she could remember my oldest sister's birthday. She has trouble with the days of the week but she remembers to take her medication. She does not live with me. She lives in a retirement community very close to me. She is not to the point (yet) of needing constant supervision. When she talks to me she wonders why she has such trouble remembering names and such and says how horrible it would be to not remember her children or grandchildren. She does not know that her doctor has told me about her "diagnoses" of AD. I'm scared to tell my mother. I'm afraid she would be devastated (as I am).

My mother has been on Aricept for about 2-1/2 years when we first started noticing her memory "problems". She has had TIA's (mini-strokes) in the past that we felt contributed to the memory loss. And now Alzheimer's!!!!!!! I guess I'm just in denial and don't want to watch my mother deteriorate before my eyes.

Thanks to any who read this. I'm just spilling my soul. I'm scared about the future.

Beginning · 11-28-2003, 05:56 PM

I'm just at the beginning of this road myself, so I won't be the most helpful person you'll hear from. My husband was just diagnosed with early onset Alzheimers (he's 59) within the last two months, and we're still making appointments, researching, etc. One of the things we've done is changed doctors, since our first neurologist was an extremely poor communicator. We couldn't get any information from him, and with 3 kids - one only 11 years old - we really needed to know as much as possible about what to expect.

There could be a few things going on here. First, Aricept is an Alzheimer's drug. The package insert tells the patient about this. Your mother may know a lot more about her illness than she has told you. Second, the doctor may be a poor communicator. I don't understand what the problem is, but we've had real difficulties in getting doctors to talk about Alzheimers. Even our family doctor, who has always talked to us about illnesses in the past, seems very hesitant to say anything about this illness. The doctors seem embarrassed, or afraid that we'll be angry/confrontative. We've noticed that our doctors talk to me instead of my husband, even though he's only in the early stage. Third, the new health privacy laws have made it very difficult for doctors to speak to family members without the patient's authorization.

I suggest that you and your mother make an appointment to review her medical situation with her doctor. She should give each doctor a written waiver for you to talk to him/her. You need to do some research and start to become prepared for the changes that will occur. If your Mother had cancer or heart disease, you would get learn about her illness and get ready for emergencies. The deterioration of a parent is frightening, and the loss of a parent is heartbreaking. Learning about her illness and helping her may give you a feeling of having a little control over it, and you will be in a better position to help. Determine whether there's a local Alzheimer's Center, University program or other local resource that might provide your both you & your mother with assistance and guidance.

You & your mother also need to take care of some legal issues as soon as possible. My husband and I met with an elder care attorney for an hour (well worth the $260 we were charged), and reviewed our situation. Some of the things that your mother may need to into place are a will, a living will, and a power of attorney if she hasn't already taken care of them.

You will also need to have details about her living situation, so you can determine at what point changes may need to be made. If there's any question of competency, the elder care attorney can help you determine what else you can do to ensure that there will be a competent decision maker looking our for your mother's interests.

It has been helpful to keep a running checklist of things that I need to take care of, and then to strike them off when they're done. It seeming very overwhelming at the beginning, but I look at my checklist and realize that I'm making progress in getting things in order.

Finally, most importantly, your Mother is probably very scared. Keep hugging her and telling her that you love her and will be with her through this journey, just as you would if she was going through another serious illness. She's not alone and she doesn't have to face this illness by herself.

Accepting the illness gets easier. I'm still very, very scared too, but it's amazing how much strength we have for our loved ones.

Kaylynne · 11-28-2003, 06:57 PM

Thanks for the reply, Beginning. My sisters and I do plan on taking care of the power's of attorney and living will this Christmas. My middle sister will be taking our mother with her at Christmas and also plans on taking her to a neurologist. My mother has seen one before (a couple of years ago) and that neurologist never mentioned the word "Alzheimer's" but I realize that a lot can happen in that span of time.

I have often talked to my mother about going to an assisted living center but she begs me not to move her. It was hard enough moving her from her home where we all grew up into the retirement community that she lives in now. Really, my mother is doing fine where she is now. I have no idea how this disease progresses or at what rate but until she gets to the point that she forgets her medications or no longers takes care of herself, I don't want to move her.

I work full-time while my sisters do not. One of them lives out of state while the other lives about 5 hours away. I am the youngest and am very close to my mother. The two of us have been through quite a lot together in the past few years and it looks like we'll be going through quite a lot in the future, too.

kenonutty · 11-29-2003, 10:06 PM

kaylynne,
So sorry to hear about your mom. I take care of Alzheimers patients in their homes. I have learned a lot just from trying different things and mostly by educating myself. I have found the most help from the Alzheimers Association. They have workshops that I have attended, and they can also recommend some literature for you to read to explain all the different stages and what to expect.

One of the things they do tell you is what Beginning already told you...To get the legal things in order while its still possible... and to give her all the love and hugs and laughter you can!

One book that I purchased from the Alzheimers assoc. is called "THE 36 HOUR DAY".. it has been the most helpful to me. I carried it with me every where i went for a long time. I dont remember the author, but I'm sure the assoc. will know. It is kind of like a reference book...I never actually sat down and read the book like a book...I just used the index to look up whatever problem I was having at the time to see different ways to deal with it. and actually wound up using nearly every chapter! But it is chock full of valuable information that might answer a lot of your questions! Even the ones about what to tell the patient about their disease.

My prayers are with you and your family....God Bless....

camachinist · 12-01-2003, 06:34 PM

Couple bits of advice:
Get a diagnosis of probable AD from a qualified neurologist, working in concert with a psychologist and neuropsychometrist. This can be a very involved process, both for you and mom. It took about 3 months of appointments, along with a 20 page family history and journal, for our local AD research facility to diagnose my mom with vascular dementia. They will follow her case until she is deceased and then autopsy her brain.

Get mom an automated medication dispenser now, while she is still cognitive enough to take her meds on her own. This will extend her independence beyond the time when she no longer understands what the meds are for and what dosage she should take. Consistency is the keyword.

See if mom is becoming overwhelmed with her daily responsibilities. Stress can play havoc with short term memory. Ask any full-time care partner of an AD/dementia patient. Perhaps, part-time help for mom at her independent living facility could ease her burden.

Investigate vitamin regimens, such as E, B6 and B12....

Have a thorough blood panel done, checking for any evidence of diabetes, component deficiencies, and thyroid function, as examples. An EKG, if not done recently, would be a good idea. Heart irregularities can affect blood flow to the brain and how blood circulates in the brain.

As dementia patients go (if your mom is one), your mom is high functioning......so, make sure it is dementia/AD before making any important decisions regarding her care.

Best wishes!

Pat