Anne
I am so sorry to hear about your mom's condition. it must be very frustrating for everyone when she makes big mistakes that you knows how to do. Is it difficult not to get angry with her?

Let me ask you indulgence as I post on this subject. It is near and dear to me. My Daddy has Lewy-Body Dementia (LBD). It is like AZ (there are 100's of dementias) with the exception that LBD has a life expectancy of 7 years and people with LBD hallucinate. They DO NOT hallucinate with AZ. At least that is what we were told by the neuro-doc.

By the way, DO NOT see a GP if you suspect dementia. They are not qualified to diagnose the different kinds and it's very important that it IS diagnosed correctly because certain meds can have an adverse effect on the patient. Believe me, I learned the hard way.

ALSO...THIS IS IMPORTANT. Just because your Mom has memory loss does not mean she has dementia. She could simply need B12 shots, or could possibly have a thyroid problem. It pays to have it checked out. There are meds on the market that can slow the process of dementia and give your love one a better quality of life for the remainder of their time. Don't wait until it is too late to either 1) find out it was only B12 deficiency, or 2) the dementia is so far gone the meds won't help.

We (my sisters and I) took care of Daddy for 7 years, as I said, and he died almost to the date. Here is the jest of a brochure I wrote that the State of Alabama has on hand for people being introduced into the horrible world of dementia.

If you suspect your love one has a memory problem, contact a doctor who specializes in Dementia. Most MD’s are not specialist in this field and may attribute memory loss to old age. If your doctor doesn’t take your concerns seriously, contact one that does.

Keep a journal of suspicious behavior BEFORE you visit the doctor. This list aides the doctor in determining how much memory loss has occurred, and after careful evaluation, how much and the kinds of medications needed. This list, along with the doctor’s evaluations and test, provide a timeline for approximating the onset of the disease, and how much it has advanced. This is an emotional time. Writing down the facts in advance gives you more time with the doctor to ask questions and listen without having to recall previous situations with your love one.

If others are involved in your lives, make sure to involve them from day one. Take them with you to the doctor appointments, if willing, and let them hear and see everything. It is important to have someone else there on the initial visit as information may seem overwhelming and important details could be overlooked.

Do I tell my love one what is wrong when diagnosed? This is up to individual families. Your doctor should be able to assess the situation and make helpful recommendations. The final decision, however, is absolutely yours.

Once diagnosed, the doctor may request the patient no longer drive. This can be particularly devastating to the patient, but is necessary for their protection and welfare. Most often, by the time you make the decision to consult a physician, the disease has progressed to a phase that would render them incapable of making critical decisions while driving. This poses a danger to the patient and to other drivers as well. The caregiver is responsible and liable should an accident occur. It is the responsibility of the doctor to notify the state if a patient continues driving after the family has been advised against it. Once reported, the State Transportation Department usually revokes the patient’s driving license.

This is an area where the caregiver’s support group can help. Check with your family and friends and see if they will offer to take your love one out for a drive occasionally. This gives the patient something to look forward to, and also gives you, the caregiver, time alone which eventually becomes a scarce commodity.

Try to keep their surroundings and routines the same (i.e., home environment, mealtimes). There are exceptions. One would be to “child-proof” areas where they might read, sit, or eat (Example: use sturdy chairs for reading and mealtimes, bibs when eating, placemats for spills, and use unbreakable dishes/glasses). Move nightstands, stools or other objects away from their bedside in case of wandering during the night, which is common with dementia. Move furniture away from their walking area in the home to prevent falls.

Unfamiliar places and people could confuse or make them feel paranoid, insecure, and even agitated and/or violent. Keep changes to a minimum.

Dementia patients lose their ability to reason, and some, hallucinate. Don’t argue with the patient! What they see is what they see! Also, when you argue, there is the risk of the patient becoming agitated or worse, violent.

Wandering and feeling displaced or lost is common with people who have dementias. Some are convinced they are in the wrong home and feel the need to leave. Try changing the subject by asking them to help with a task, or you can suggest an outing for ice cream.

The time will come for “Depends” or other products. Uncontrollable body functions are common with dementias. You will know when to suggest using them. Hopefully, by the time you need to use these products, they won’t realize what they are and will be grateful for the help they provide.

Patients could become paranoid about money, possessions, or family members. Long-time friends suddenly are the enemy in their eyes, so they may refuse visits or calls from them. Some patients loan items to family members then accuse them of stealing. Because they live somewhat in the past, some patients may believe they are still employed and wonder why they are not receiving pay. While these patients lose the ability to know a dollar bill from a 50-dollar bill, or even count change, the importance of money is still in their minds. Dedicate a place in your home where an envelope contains their “paycheck.” Without them knowing, place small amounts of money in the envelope the day before they are schedule to be paid and present this to them. Do not give dementia patients large sums of money. One family did and sad to say, a con artist convinced the patient to write them a check for everything in the family’s checking account.

As the dementia progresses, some patients hide personal items like keys or important documents. Have extra keys made to everything. Give other family members or trusted friends sets of keys to your home and automobile as well. Assess documents and valuables you have in your home and determine if they need to be in a safer place. By leaving Wills, Deeds, CD’s, etc, in your home, you run the risk of them finding them, destroying them or even throwing them away.

We all need support. Don’t wait to tell family members, friends, neighbors, or church members. While it may seem unnecessary, what if your love one wandered off and was lost? If your neighbors know the facts and see them, they would feel comfortable in knowing they needed to help guide them safely home.

These people become your support group. They laugh with you, cry with you, and listen to you. There is no such thing as too much support. You will need all the support you can possibly get, including other members of the medical community such as the patient’s family dentist, general doctor, etc.

Identify task that can be assigned to the patient like folding laundry, taking out garbage, retrieving mail, or answering telephone calls. This gives them a sense of accomplishment, of pride, and of belonging. It is very important for them to feel needed and a part of daily routines. There will come a time when this is no longer an option. If your love one has a hobby, encourage them to spend time pursuing this hobby and if possible, join in. You will not regret the quality time you spend together

Keep your sense of humor. Humor? Yes, humor. It often helps to laugh when crying would suit the situation better. Remember, this is a disease that intends to strip your love one of every ounce of dignity and to further that intention by making you, the caregiver loose sleep, money, sometimes friends, social life, and what little peace that may have existed in your life.

Personal appearance and eating habits may change drastically. Some may refuse to bathe, wash or comb their hair, or shave and because some have Parkinson-like symptoms, their hands may shake uncontrollably, therefore, messes are made and frequent spills occur. Ask your love one if you can help with their daily grooming. When shaving male patients, try having them lie down instead of standing. For messes when eating, try telling them how much you love the shirt/blouse they are wearing and explain what a pity it would be to soil it. Present them with a bib as a gift. This is usually accepted and happily worn. When spills happen, let it go. Save yourself for the big things. Announce, “I do that all the time!” and continue your meal.

Falls are probably the leading cause of death with dementia patients. Once a patient falls and breaks bones, they risk developing pneumonia. Because their medicines are limited, they’re unable to overcome the pneumonia; thus some die.

As the disease progresses the patients become weaker. They no longer have strength and abilities they once possessed. This may begin by falling over a footstool, or missing the seat of a chair. Remember, these patients have lost their peripheral vision, balance, cognitive abilities, and strength. Combined these losses and it should help you to realize why dementia patients need CAREGIVERS. There are things you can do to help prevent falls like installing handrails outside your home for stairs, even if there are only two steps. Walk in front of the patient or behind when using steps. Rearrange your furniture as mentioned earlier, and make sure they have good, supportive footwear. You can also purchase a walking stick to aide them going room to room and of course, offer your assitance, ANYTIME!

JJ, thank you so VERY much for your informative post. Especially the part about making a list before visiting the doctor is an excellent tip. Instead of going to our family doctor, I'm going to ask him whom he would recommend.

I hope and pray that my mother's signs are only normal signs of getting old. I took her for a ride today to the Bavarian alps. It was such a beautiful day. While walking along a path, she suddenly broke out into a run. I mean run! (My mom is 85). When I caught up with her (pant pant), she just laughed and said she needed to do that, she hasn't run for years. She's unbelievable. She seemed so youthful and fresh today, that it makes me almost ashamed to want her checked. It's just so different from day to day with her.

Anne, now that's an example, (what JJ suggested), where you could try to see the humour in seeing "a two story black car". I think it's probably the only way to prevent going down hill yourself. I know it's easier said then done. I know, Hon.

J.J. this is so true what you have written about the signs of Alz . My mother's first sign of Alz was she had lost her sense of smell and did have much of an appatite all at times . This is just only one of the signs and many more did come later .

I talk to a lot of people on the Alz chat room message board .

Renee

Wow, JJ, you really are a fountain of information.

Hanelore, how you must have enjoyed watching your mother run in the mountains! I love experiencing what makes other people smile and laugh.

Anne, a two story car! I hope you can find the humor for as long as possible. It must be frustrating.

Renee, my mom has been complaining about not having an appetite. We all assumed it was some medication she was taking. Maybe it is related to the memory issue.

I learn so much from my friends.

JJ, thanks so much for all the wonderful information. We are in the process of gettting a proper diagnosis for a loved one.

Our loved one has been to a geriatrician, been given the small verbal test for dementia, had an MRI, but we still don't know exactly what we are dealing with.

Medicine has been prescribed for depression and our loved one became much WORSE. Now no longer on that med. Thank God.

Is now on another medication that slows down the dementia and it seems to be helping.

We will soon take our loved one to an expert in the field at Hopkins. Then we should learn exactly what we are dealing with. Having Hopkins in our back yard is one of the beauties of living in Baltimore.

I'm sure Lynn would agree. SOme of you don't remember Lynn, but she hung out with us while her hubby was being treated at hopkins for his pancreatic cancer. He remains in remission!

Anno, you are right about learning so much from your friends. The wealth of knowledge women have to share is one of the reasons I launched this site.

Your mother was lucky that you were together. It is really scary when physical and mental issues arise. As you have learned, medication levels in the blood stream cause problems. I was exploring information for a friend whose mother lives far away. In the exploration I came across www.lifefone.com and it was interesting.

My concern is since my vision is decreasing, the chance of falling increases also. This product allows me to be connected to a monitoring group anywhere I go and not just within a short distance. If I read the information correctly, they can also contact the doctors immediately so 911 learns what medication and other important information is necessary for proper emergency care. Check it out just to make sure I read everything correctly but this can help others also.

Phyllis, are you saying you may lose your vision? Is this a recent development you have? I just heard that Bill Gates is working on a new computer screen for the visually impaired. Have you heard of that?
Hannelore

This parent-care journey is filled with laughter and tears. I know you all understand this. My mom's short-term memory has skipped town. She and I know it. She compensates by leaving little notes around her room (assisted living) with bits of things she wants to tell me and needs from the store.
One day, I found a note written in shorthand. Mom was a business ed. teacher back in the day of dictaphones, electric typewriters, and shorthand.
"Mom, you'll have to translate this for me. I never took shorthand."
"Oh, honey. That note's not for you," she said.
"Um...what is it, if you don't mind me asking?"
She said, "Since my memory is not so good, I often forget things I need to stay fussed up about. So, I've taken to writing them down."
I smiled. "So, this is a list of things to stay mad about?"
"Yes. Some things you just need to stay upset over."

Well...there you have it. I have to add -- Mom watches a lot of CNN, so a number of things on the list are probably world issues. I didn't ask her to translate the list, just in case I was on it somewhere. A woman has to have some secrets, after all...

When my dear sister was suffering from the ravages of MS, she would have to have little notes left all over my mothers house. Like don't trhrow your panties in the toilet, or don't hide food in the dresser drawers, or flush! It was so strange one day, we were at the doctors, sister, mother and me, and mom was telling the doctor about the notes and that they weren't working anymore and my sister looked at all of us and said, "Yeah, well wheres the note that says to read all the other notes?" Sometimes she was herself and we all had quite a good laugh. One of our last ones together...