7th June 2008
First, welcome to the forum. I am sorry you have to be here but you have found a great place to network with so many that share the same experiences you are going through. This is a great place to share experiences, vent frustrations, and get answers from real life experience. These gals and guys have been my salvation and sanity.
What you describe sounds like dementia rather than "normal aging". Though it could be a result of medication side effects or a number of other medical reasons. I would definitely get her to the doctor for a complete physical including extensive blood work. If it is a medical condition that can be treated then you need to do that. If it is a form of dementia then you know the prognosis.
Dad has had dementia for about 7 years. Mom talked to their doctor on one of Dad's regular check ups, it was determined he had dementia (it was obvious) and Dad was never aware of the diagnosis even though he was told. He just slipped into his strange world and is happy for the most part. He was misdiagnosed with ALZ when in fact he has vascular dementia. I'm not sure what difference it makes except his progression had been much slower than Mom's has.
I have been where you are with Mom. Mom's mother and several sisters had Alz and it was definitely her worst fear. We noticed the same types of things as you have We did bite the bullet and had Mom tested because she was Dad's primary caregiver. The only reason Mom cooperated was to prove us wrong. According to her, there was nothing wrong with her. She was diagnosed with moderate to sever dementia consistent with ALZ a little less than 2 years ago.
What we realize later was that Mom herself realized that she was having difficulties several years prior to her diagnosis. She never admitted it but was already experiencing the depression you fear. She had her doctor convinced that it was only depression which was a result of caring for Dad and was already on antidepressants . Then she left that doctor and went to a new one that was clueless. If we ever noticed anything she dismissed it by saying "your Dad did it." After her ALZ diagnosis she cried for a while but then she was ok. I realized that she had totally forgotten the diagnosis and again thought she was fine. The strange things she did were blamed on the sitter we had with them or on Dad or because we would not leave her alone. She was retested 9 months later and it was much worse. This time the testing doctor insisted that she stop driving. That sent her into a tail spin and she ran off the sitter punctuated with fits of sever depression while she blamed me for having her driving privileges taken away for no reason.
We then took her to visit an AL facility and she decided that was the place to be.... since Dad didn't do anything to help her around the house. He was well into Vascular Dementia and couldn't even take care of himself let alone help her. After they moved, Dad adjusted well, and Mom still says there is nothing wrong with her and if we would just let her go back home then it would all be ok, with more bouts of depression which we are treating medically.
I think what I am saying is that your Mom realizes that something is amiss. Some days Mom was aware and other days, in her confusion, it is the rest of the world that goes crazy and not her. Even after diagnosis they go back to thinking they are ok. Both of my parents have. They just don't understand why the world around them has gone so crazy.
I did have an aunt that was diagnosed early. She was amazing. She would talk to you about her ALZ. She wrote note to herself from the beginning and used them to prompt her memory. She never had depression and was able to function well for a long time even knowing her diagnosis... which she kept written on the fridge.
It is going to get worse no matter what you do. The current medications, aricept and namenda, are both the most effective if given early in the disease process. According to the research center we took Mom it actually does the most good before you know you have ALZ and that is why they are trying to come up with early diagnosis techniques. I am not sure what stage or level is the mythical cut off but we were told that it would probably have little benefit for Mom. I haven't seen a reduction in Mom's decline since she started the medication. We are actually considering taking her off the meds.
As for the doctor. I have been through that as well. I got very little help from her primary physician. I made the appointment with the Memory Assessment Research Service myself. After the testing I dropped a copy of the cognitive testing off at his office. When I went back with Mom he gave me that same patient confidentiality statement. I finally told him to talk to me in front of Mom because she didn't have her hearing aid in, couldn't hear what we said, and wouldn't remember what was said anyway. He looked at me like I had grown three heads. When he told Mom she could drive but needed to pay more attention when she did, I looked at him as if he had grown three head. He truly didn't understand dementia. Patient confidentiality may have an important function but it is definitely not a friend of the elderly.
You need to have your Mom put your name or your Dad's name on her HIPPA form at the doctor's office. That will give him permission to talk to somebody about her medical condition. We made sure we did this at all of Mom and Dad's doctors and it has definitely helped. Now we can call about things we notice, talk to the doctor, and get instructions.
You also need to make sure that your Dad, or you, have a durable power of attorney and medical power of attorney. This way you can sign for her, determine her medical care, and do what needs to be done as her disease progresses. Mom was the one that did this for us. She realized, after caring for her Mom, how important this is. You can always couple these papers with will preparation and make it all a part of "being prepared".
If I had to do it again.... I'm not sure we had any other course of action than to have Mom diagnosed since she was Dad's primary caregiver and we couldn't leave two dementia patients to take care of each other. I do know that Mom's depression is a direct result of her realization that she was slipping into ALZ. It happened long before her actual diagnosis. We are still dealing with her depression, denial, and grief for a life that she can't have.
Is your Mom aware of time? Does she know what day it is. How are her math skills. Can she subract number? Does she repeat herself? Can she still operate electronic devices? If she is advance in her dementia then the current ALZ medications may not be the miracle the ads promise. They do not revers the disease. They only slow the progress from where she is now. That is a determination which needs to be made by a knowledgable doctor. Not one that just puts them on the medication because it's the only treatment they have available.
I do wish you good luck in whatever you decide to do. I will keep you, your Dad, and your Mom in my thoughts and prayers.
Love, deb
PS.... sorry I got so wordy. It's late and I just finished dealing with yet another parental crisis.
What you describe sounds like dementia rather than "normal aging". Though it could be a result of medication side effects or a number of other medical reasons. I would definitely get her to the doctor for a complete physical including extensive blood work. If it is a medical condition that can be treated then you need to do that. If it is a form of dementia then you know the prognosis.
Dad has had dementia for about 7 years. Mom talked to their doctor on one of Dad's regular check ups, it was determined he had dementia (it was obvious) and Dad was never aware of the diagnosis even though he was told. He just slipped into his strange world and is happy for the most part. He was misdiagnosed with ALZ when in fact he has vascular dementia. I'm not sure what difference it makes except his progression had been much slower than Mom's has.
I have been where you are with Mom. Mom's mother and several sisters had Alz and it was definitely her worst fear. We noticed the same types of things as you have We did bite the bullet and had Mom tested because she was Dad's primary caregiver. The only reason Mom cooperated was to prove us wrong. According to her, there was nothing wrong with her. She was diagnosed with moderate to sever dementia consistent with ALZ a little less than 2 years ago.
What we realize later was that Mom herself realized that she was having difficulties several years prior to her diagnosis. She never admitted it but was already experiencing the depression you fear. She had her doctor convinced that it was only depression which was a result of caring for Dad and was already on antidepressants . Then she left that doctor and went to a new one that was clueless. If we ever noticed anything she dismissed it by saying "your Dad did it." After her ALZ diagnosis she cried for a while but then she was ok. I realized that she had totally forgotten the diagnosis and again thought she was fine. The strange things she did were blamed on the sitter we had with them or on Dad or because we would not leave her alone. She was retested 9 months later and it was much worse. This time the testing doctor insisted that she stop driving. That sent her into a tail spin and she ran off the sitter punctuated with fits of sever depression while she blamed me for having her driving privileges taken away for no reason.
We then took her to visit an AL facility and she decided that was the place to be.... since Dad didn't do anything to help her around the house. He was well into Vascular Dementia and couldn't even take care of himself let alone help her. After they moved, Dad adjusted well, and Mom still says there is nothing wrong with her and if we would just let her go back home then it would all be ok, with more bouts of depression which we are treating medically.
I think what I am saying is that your Mom realizes that something is amiss. Some days Mom was aware and other days, in her confusion, it is the rest of the world that goes crazy and not her. Even after diagnosis they go back to thinking they are ok. Both of my parents have. They just don't understand why the world around them has gone so crazy.
I did have an aunt that was diagnosed early. She was amazing. She would talk to you about her ALZ. She wrote note to herself from the beginning and used them to prompt her memory. She never had depression and was able to function well for a long time even knowing her diagnosis... which she kept written on the fridge.
It is going to get worse no matter what you do. The current medications, aricept and namenda, are both the most effective if given early in the disease process. According to the research center we took Mom it actually does the most good before you know you have ALZ and that is why they are trying to come up with early diagnosis techniques. I am not sure what stage or level is the mythical cut off but we were told that it would probably have little benefit for Mom. I haven't seen a reduction in Mom's decline since she started the medication. We are actually considering taking her off the meds.
As for the doctor. I have been through that as well. I got very little help from her primary physician. I made the appointment with the Memory Assessment Research Service myself. After the testing I dropped a copy of the cognitive testing off at his office. When I went back with Mom he gave me that same patient confidentiality statement. I finally told him to talk to me in front of Mom because she didn't have her hearing aid in, couldn't hear what we said, and wouldn't remember what was said anyway. He looked at me like I had grown three heads. When he told Mom she could drive but needed to pay more attention when she did, I looked at him as if he had grown three head. He truly didn't understand dementia. Patient confidentiality may have an important function but it is definitely not a friend of the elderly.
You need to have your Mom put your name or your Dad's name on her HIPPA form at the doctor's office. That will give him permission to talk to somebody about her medical condition. We made sure we did this at all of Mom and Dad's doctors and it has definitely helped. Now we can call about things we notice, talk to the doctor, and get instructions.
You also need to make sure that your Dad, or you, have a durable power of attorney and medical power of attorney. This way you can sign for her, determine her medical care, and do what needs to be done as her disease progresses. Mom was the one that did this for us. She realized, after caring for her Mom, how important this is. You can always couple these papers with will preparation and make it all a part of "being prepared".
If I had to do it again.... I'm not sure we had any other course of action than to have Mom diagnosed since she was Dad's primary caregiver and we couldn't leave two dementia patients to take care of each other. I do know that Mom's depression is a direct result of her realization that she was slipping into ALZ. It happened long before her actual diagnosis. We are still dealing with her depression, denial, and grief for a life that she can't have.
Is your Mom aware of time? Does she know what day it is. How are her math skills. Can she subract number? Does she repeat herself? Can she still operate electronic devices? If she is advance in her dementia then the current ALZ medications may not be the miracle the ads promise. They do not revers the disease. They only slow the progress from where she is now. That is a determination which needs to be made by a knowledgable doctor. Not one that just puts them on the medication because it's the only treatment they have available.
I do wish you good luck in whatever you decide to do. I will keep you, your Dad, and your Mom in my thoughts and prayers.
Love, deb
PS.... sorry I got so wordy. It's late and I just finished dealing with yet another parental crisis.