Expert: Mary Gordon - 8/21/2011

Question
Mary,
   Thank you so much for taking the time to answer my question(s) a few days ago. Your answers have brought me a much greater understanding of some aspects of my moms disease.A lot of my angst and sadness stems from a few things with my moms disease.
1) Shes my mom and I love her like no other.
2) I want to help her but I am powerless in this situation.
3) I have no clue as to what she truly has. She was diagnosed with
  AD, then vascular dementia, and now lewy body dementia.
4) I often find myself wondering if at this stage of whatever it
  is she has,, does she know in her heart that I love her? or
  does she see me as just another person that she visually sees?

My mom was 100% healthy. She woke up that morning and went for a walk. She came home and called my sister crying that while she was walking something happened to her and that it was very bad. While walking she all of a sudden felt a very sharp pain in her head and had the worst headache imaginable. I suspect this may have been a ruptured brain aneurysm. She later went to the hospital for a scan. It showed nothing had happened. I now question some of the medical advice from doctors that my mom seen. I question the medicines prescribed to her for AD when it very possibly was something else and now I am thinking the side effects from some of these medicines have actually helped in the extremely rapid progression of her mental illness. Therefore I am feeling a lot of guilt just thinking "what if I had done.....", or why didn't I do ......". Not that my mother is any different than anyone elses loved one that has or is enduring this but this is so WRONG on many fronts. She never drank, never smoked, never did drugs, and was always in church. She was a nurse. She cared for the very people that she has now become.
I apologize for getting off topic but this is the hardest thing in 46 years of my life that I have had to endure. Maybe it just helps for me to express my feelings to someone such as you. I am going to get involved with a local support group for this because I am now realizing that maybe it will help me in figuring out a lot of the questions and concerns I have. Thank you Mary for your time and effort in helping everyone that seeks an answer. I think you are amazing that you do this. If you are ever in Georgia, look me up and please let me and my wife do for you.

many thanks,

Jeff Sanders

Answer
Hi Jeff, sorry you have waited so long for a response. Something has gone kaput with my mouse and I genuinely thought a response was sense - so I'll have to reconstruct what I wrote.

It is unfortunate you did not had good experiences with the doctors assessing your mother. A lot of doctors don't really know much about dementia, and quite often, they don't do thorough investigations. They just assume confused older people have Alzheimer's, without having ruled out other illnesses or types of dementia - it makes me angry, since you know they would do a much better job in investigation if the person was younger. It is very suspicious that it came on suddenly. Both Alzheimer's and Lewy Body brew slowly - they don't come on overnight. It's much more likely it was something vascular, like a stroke, a bleed or an infarct.  It's also very suspicious that her abilities are so "lumpy" in that she is impaired in some areas and yet so intact in others - that is much more characteristic of a vascular dementia than Alzheimer's or Lewy Body. People with Alzheimer's and Lewy Body develop muscular coordination and balance issues that lead to that slow shuffling walk you may have seen in other residents - and my poor mother in law certainly couldn't have played a number recognition game like bingo if her life depended on it.

What ever the underlying process is, don't beat yourself up. It sounds like it is a progressive, and irreversible condition, and I doubt very much that anything could have been done to change the course of what happened to her. You have to let that go. It is what it is, and you just have to go with it day by day.

At the end of the day, your real job is to love her - and you are doing that. You are bringing comfort and whatever small pleasures you can to her life, to brighten her day, make her feel safe and cared for. You are looking out for her, and doing everything you can for her.  That is what it's all about. We may not be able to protect the people we love from all the unfortunate and random things that life may bring, but we can hold their hands and watch the world go round with them . It's not fair. I know we all want to think that people get what they deserve, but the truth is good people who have tried to live good lives, worked hard, and done everything to take care of themselves sometimes get terrible illnesses - and at the same time, those who have been miseries all their lives, and abused their bodies, live to be 90. It's sad and it's crummy and it breaks your heart.

Your mom may or may not be consciously aware that you are her son. Quite often they have forgotten their later years, and may not realize they have grown children. That doesn't mean she doesn't recognize that you are a familiar face and a loved one - that her soul has a kinship with yours.  My mother in law, for example, forgot she'd been married. She'd talk about going home to her parents house, expecting them and her three sisters to be there. She'd even sign her maiden name. So she'd completely lost the thread of her adult life that included conscious awareness of motherhood. However, even though she couldn't figure out who we were, but she still knew we were family. She decided my husband (her only child) must be HER late husband - he did resemble his father - and she decided I must be her sister. It was sad and funny at the same time, but she was always very glad to be held and paid attention to, so we just went with it.  More than anything, she needed to be reassured, to be comforted, to be distracted and diverted. We brought picture books, and puddings, and played old music, took her out to the garden. Whatever we could think of.

Think what a swirling jumble their lives must be. It must be very frightening.

Here is a really great article about the experience. Don't be put off by the use of the Alzheimer's term - the same types of loss happen with all the major dementias. It's full of good insights, tips and information.
http://alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dementia%2

I know this is so hard. The dementias are not like other illnesses. You do your grieving while the person still lives, because you are losing them by inches, powerless to stop the process. I know you want her back and would move mountains if there was something that could restore her to herself again. It's painful every inch of the way. It stretches your heart, and teaches you lessons about loving kindness and compassion. You know wherever she is heading, she knows she is loved. You are a testament to the value of her life - truly - she raised a caring son.  

I do think talking to others going through the same thing might help you. I've often talked to people losing loved ones to dementia, and they start telling me their stories - and they are so relieved that there are others who have been in their shoes, and lived through the same perplexing, confusing, upsetting, and even bizarre situations that cognitive impairments can create. No one can understand unless they have lived with it. I know my husband was pulled apart by his mother's illness. She looked like herself, she had the same speech patterns and mannerisms, but in the most fundamental ways, she was a different person, and a lifetime of experience of her, and expectations of her reactions, abilities or behaviors had to be thrown out.

I'm thinking of you.

Mary