As many know, especially our family, my wife Cheryl and I have moved in to be care givers for my mom – to help her through the “Sunset” years. Perhaps some don’t know that she has Alzheimer’s and Dementia (the two go hand in hand apparently) and a host of other minor conditions. Mom is also a Breast Cancer survivor, having gone 4 years now since she was diagnosed and received treatment. She recently also fell and broke her hip which is the main reason why we’re here: To help my mother deal with these issues and to make it so that we share the burden with my sister who also lives close by.
I decided to start this new series in my blog so that there is a record of how we are dealing with mom’s Alzheimer’s / Dementia (AD from now on). A broken hip is serious to be sure, but it pales in comparison to the day to day issues of working with and providing care for a person who has AD. I suppose it’s fair to say that modern medicine has very little understanding of what AD is, or why it happens, so maybe a chronicle will help others in their approach to their aging parents or spouses or loved ones. To me, it’s a tragic and debilitating condition that might be summarized as “reverse development.”
You’re asking yourself now, what the heck does he mean by “Reverse” development? In talking with my sister yesterday, I realized a very important thing – that as we grow from infants to adults we are putting on successive layers of vocabulary and meaning, and we become more able to communicate with the world around us and to express both our needs and our feelings and concerns. The opposite is clearly happening to my mother. You can tell from listening to her that she’s trying to use words she still knows (and thinks she understands) to convey her feelings and to describe what’s happening to her.
Let me give a few examples. She woke up the other night in a nursing home, and she had no idea where she was, but she could hear lots of people (the nurses and staff, and maybe the TV and a radio) so she called it “A Party.” She went to Physical Therapy on Saturday, and she rode a stationary bike. She used to have one, but she’s forgotten it, and she really has no concept of what it is any more, so it became “A Tricycle.” Her effort to describe her circumstances is confined to the vocabulary she still has and is necessarily difficult to understand. That, more than any other reason, makes it critical for care givers to know their patient! If it’s not the family providing care for a person with AD, then it must be a person who is well familiar with the patient, or one who perhaps develops a long term relationship early on during the onset of the disease.
Obviously, my mother knows me, and my wife, and my sister and her husband still. She has difficulty remembering her grandchildren any longer, and it won’t be long before she cannot remember them at all. The best thing I have heard and seen in practice already is the need for constant, or perhaps consistent contact and interaction. When mom sits all day with nothing to do, her mind wanders and the confusion caused by the AD worsens. But, when we visit her and talk with her, and have her focus on events she clearly remembers from the recent past (especially the accident where she broke her hip, that memory formed very well in her brain and she enjoys telling the story), that helps her to “come back” from her mental wanderings and track well with the present. Her confusion abates slowly, and she is sharper in the morning than in the evening.
The “Sundowner’s” symptoms she exhibits is also very common, and may be attributable to the fact that these people (AD patients) get their memory drugs in the evening, before bed, and so awaken sharp, where the effects of the drug wear off through the day such that they are fatigued and fogged towards the end of the day. It may have nothing at all to do with the drug, nobody even knows whether the drug has any effectiveness at all. What is known is as I said above, mom must have consistent contact, with lots of interaction with people she knows and loves (and trusts) in order to help clear her confusion and reduce her agitation level.
The “Time displacement” factor as I like to call it is another interesting (albeit tragic) aspect of AD. Folks will often say for the AD patient that “60 years ago seems like yesterday for them, and yesterday seems like it was ages ago.” This is quite true with mom. It’s difficult to pin down any particular reason why this is true, it’s most likely the general confused state in their minds that leads to old memories being just as clear and important to them as recent ones. It may also have to do with the fact that new memories (short term primarily) are not forming well, and this leads to some kind of “short circuit” where the brain tricks them into believing that old memories are on the same time continua with more recent memories. That is difficult to say for sure! All I know is that with mom, we can bring her back to the “present” by having her focus on a recent event that formed well in her brain, in this case, the accident where she broke her hip.
Just having her tell the story again of how she “kicked a trash can” and went down like a sack of potatoes, and then was rescued by a “Guardian Angel” is very therapeutic for her, and it helps her understand very quickly about her circumstances and that she is still dealing with a recent tragedy, not some event from another time in her life.
I will write more about this later. It’s helpful for me also to organize my thoughts on this and to write it all down. I hope it’s a benefit for someone else too.