Does my mother have Alzheimer's or just dementia?

3 answers | Last updated: Sep 28, 2016
Leon01 asked...

Hi My Mom has been to see a specialist to see if she has Alzheimer's. The doctor says she as mild dementia, but did add that the family must be informed and told what is going to happen in the future and make the necessary plans for her care. He gave brochures on Alzheimer's/dementia for us all to rad. She must now go for a MRI scan so that he can make 100% sure he is correct in his diagnosis. My Mom has become very forgetful over the past 2 years, but the last couple of months, noticeably more. She has mood swings and hasn't been paying her accounts like she normally does. She still drives her car, no problem there and visits her friend. She does her shopping, and makes a list. She is on medication for cholesterol, which is not that high, but only went up around 5 years ago. She takes medication for her thyroid for many, many years and a pill for an irregular heartbeat, also something she has had for many,many years. Otherwise she is healthy. Her blood tests are good, bar the cholesterol. She is 75 years old in October this year. She used to belong to a group at the Church, where she had lots of friends and used to go to Church every Sunday, but that stopped about 2 years ago. She has problems remembering to take her pills, but after a long struggle, she has papers with everything written down as she takes her pills, so seems to have that under control. She keeps on talking about going to Cape Town, this is in South Africa, where she lives. She has lived her whole adult life in Port Elizabeth, about 800km from Cape Town. My Mom and Dad are divorced, but my Dad still tries to help my Mom where he can ( he re-married many years ago) My Dad took my Mom to Cape Town this year in February, because she spoke so much about it, we were concerned, and felt maybe taking her back would make her feel better. She stayed with her brother while she was there, but the day after she arrived, she wanted to come back home. She hated it there. When she got back, she went really bad, she was angry to hear that my Dad had a girlfriend, and that nobody tells her anything, she suddenly forgot my Dad was married, which she has always known, she knows his wife etc. But now she seems to have forgotten she went to Cape Town, because this is all she keeps on talking about, she wants to go back to Cape Town, to the point that she says she wants to go there to look for a place to stay, and other times she says she will just get in the car and ride there herself. Money went missing, and she started to accuse my brother, because she had forgotten she had given my brother money to buy her a new TV, because hers broke. She doesn't watch much TV anymore, and before thats all she did at night, because she is on her own. Now my brother fetches her every night and takes my Mom to his place for supper, because she was behaving so strangely. She seems a little bit better now, still very forgetful, but can't understand why she had to go see the psychiatrist, because she says she is a little forgetful at times, which is normal for her age and she feels fine. She refuses to go for the MRI scan, because she says there is nothing wrong with her. She has a teddy she got while in Cape Town, which has now become her friend, it sleeps with her in bed, she has crocheted a blanket for the teddy, which she puts on the teddy. If she is not in the room at night, she puts the bedside light on, because the teddy doesn't like the dark and in the morning she sits the teddy next to her on the couch while she has breakfast. These are the things she tells me, when we chat. I unfortunately am not living in SA at the moment and my brothers are having to try and take care of her. We chat on the phone once a week, but she has become distant, which I find upsetting, sometimes we are talking and she will suddenly ask me if I want to speak to my brother, and she will call him, and say goodbye. We have chatted on the phone weekly for years since I have lived in Belgium, she has always been happy to hear from me and we talk for ages, but now it has changed. My question is, how do I know what my Moms progression with dementia is going to be? I have been saving up to go back to SA to see my Mom, I want to have as much quality time I can before it is too late. Will the dementia get to the point where she won't remember me, and I won't be able to keep contact with her over the phone? I hope you can help answer some of my questions, sitting so far away, doesn't help, but I picked up the problems long before my family in SA did, because my Mom and I are close and we talk a lot and it is sad to think it might all change. Everything seems to be unclear, does she have Alzheimer's or just dementia?? Hope to hear from you. Thanking you. Colleen

Expert Answers

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

"Is it Alzheimer's or is it dementia?" is the most frequently asked question I've heard in more than 3 decades of advocating for this population. The best way to clarify this is to state that dementia is a symptom while Alzheimer's (AD) is a disease. Your mom clearly has signs of a definite dementia that may be AD or one of the other similar progressive neurological diseases that may be vascular in nature or related to other causes. The important question for you is 'what is causing Mom's dementia'. Once the cause is found, and certainly the MRI may help clarify this, then an appropriate time line for her care can be put in place. What are the issues that may precipitate placement outside her home or live-in attendants 24/7 or for parts of the day. The following are a sampling of issues that signal a loved one can no longer live alone - not eating, safety with appliances etc, medication mix-up, incontinence, household chores, and depression. She may have a need for increased socialization and physical activity. You and your family can get a better sense of the progression once you are more clear on the diagnosis. Perhaps one of the AD medications may be useful. Using the telephone is often difficult as dementia progresses; it may actually increase your loved one's anxiety and confusion as she tries to figure out where the voice is coming from and to whom does it belong. Rest assured that although your mom may not recognize you by name, her love for you is never lost. It is not you she struggles to remember, it is her relationship to you that is the problem. She may not recall your name and she may think of you still as a child, but she does know you belong to her - in whatever role she sees you in at the time. Relish each moment with her in the new cognitive world where she now lives.
Please have someone in her town monitor her driving - this could be quite a challenge as the disease (whichever it may be) progresses and her license and car need to be taken away. Be prepared for some resentment and anger when this is done. Having a willing 'scapegoat' works well - a physician or member of the police dept. or an insurance agent may be of help in focusing the anger away from a loved one. Plan ahead who will do this and when it will be done; please try not to wait for a crisis to happen. You are a devoted and loving daughter obviously trying to do the very best for your mom who is so far away geographically and so very close to your heart. Please take care of YOU!

Community Answers

Leon01 answered...

Thank you so much for your reply, I found it very helpful and it helped clarify some things I was unsure about. I am trying to organise to chat to the rest of my family that live close to my Mom, to make plans for her future. At the moment my two brothers are helping with giving her supper alternate evenings, but they are finding it a bind, even though it is their partners that are doing the cooking. But they have to drive to fetch her and take her home, after they have been working all day. Taking her car away is going to be a big problem, because she has cut herself off from everyone over the past 2 years, but she drives to her friend virtually everyday, that is the only contact she has with someone her own age, and that friend has another lady they are both friends with, and they all get together. This best friend of hers does not like driving, so she won't visit my Mom. So without a car, she would be on her own, all day, everyday, except when one of my brothers fetch her for supper. My brothers are not keen on taking her in to stay with them, because of the stress it will put on them, and say they don't have the time to drive her around. But I don't think she is ready for a home, we are going to put her name down for a care home, but in the interum, don't know what to do. Normally I would take care of her, but have been living in Belgium for many years. My Mom is aware something is going on, because she has been asking me regularly of late, when am I coming to live back in SA? I feel terrible if my Mom has to live the last of her years in a strange place, with strangers, and probably my brothers not visiting that much.I have tried to find a way that I can bring her over to Belgium, but have been told, that the law has just been changed, and we can't have family members come live with us, a 3 month visa stay is all that can be done. I think even if I bring her over for 3 months, so that we can spend quality time together before its too late, I feel might be too unsettling for her at this stage. Especially to take her back home after 3 months, and she might not be able to settle and forget a lot of things of home. This is what happened after she went to Cape Town for 10 days, this year in February,she came home and was very confused about so many things, and it improved a little some months later, but it comes and goes. What do you think I should do ??

Joanne koenig coste answered...

Your instinct is probably quite right. Research does show that geographic moves can have a negative effect on an AD person. Keeping mom in familiar surroundings may be best for her even though being away from her is emotionally draining for you. Be well jkc