Dementia and the Importance of Medical Advocacy

sheildMy Mom lives in an Assisted Living facility. She has moderate multi-infarct dementia. Last week I noticed a pretty major change in my Mom and requested that they test for a UTI.  They set her up with a visit with the doctor. They report they tested her and would start antibiotics giving me the impression she tested positive. There was no change in her behavior two-days into the course of medicine and by the end of the day a nurse called me to say the culture came back negative and they were stopping the antibiotics.

While I was there, I found that my Mom’s feet were very swollen. My Mom was complaining that her little toe hurt and would not stop pacing. When we get off her shoe, I find that both feet and calves are twice their normal size. I had the on-duty nurse visit and my Mom is not really complaining about her feet hurting – she is almost defensive that we all think her legs would hurt. Apparently, the personal aide we hired reported this to the nurses a few days earlier (before the antibiotics).

However, no one told me or seems to be following up on her swollen feet and legs. I request that a doctor visit my Mom and they initially decide to do a test to see if she has deep vein thrombosis. They call to tell me the test came back negative.After two visits from the doctor, it seems they are done investigating.

I was complaining about the lack of follow-up care for my Mom to my mother-in-law. As we were talking I tell her that I noticed my Mom was 15 pounds heavier on the scale, but doesn’t look like she’s gained any weight. My mother-in-law suggests I tell the medical staff since it could lead them to something else going on with my Mom. Maybe she’s retaining fluid which is causing the foot and leg swelling? When I call back to Assisted Living and ask if they have been tracking my Mom’s weight, she confirms that indeed, my Mom has gained almost 15 pounds in two months and tells me she will have the doctor follow-up. Did the doctor not notice this on his first or second visit? Arrgg!

I’m getting more and more signals that Assisted Living is the WRONG place to be for any patient with dementia. The programming is not geared toward her needs and the fact that she is presented with a menu at meal time makes me realize why she might not want to eat in the dining hall. My Mom gets overwhelmed when presented with choices.

Recent research confirms that a person with dementia poses additionally challenges to the medical community since they can’t report their history or pain reliably. It turns out, the un-diagnosed issue could be leading to the anxiety and other troubling behaviors.

I understand it’s difficult to help someone who can’t help themselves, but I would think the medical staff would be more prepared to address this. Could my Mom’s “unbecoming behavior” stem from an un-diagnosed medical issue? I’m more certain than ever that someone needs to be the voice for those individuals with dementia who can’t advocate for their own needs and that our current medical system seems too busy or overwhelmed to serve. Angered. 


Related medical research on this topic:

Pain, Anxiety, and Dementia: A Catastrophic Outcome

The Slow March of Dementia

thanksgiving2One of the additional challenges to dementia is the speed in which it progress. In my experience with two parents, one with Alzheimer’s and another with Vascular Dementia, they both progressed pretty slowly in hind-sight.

I’ve been invited to speak at local libraries and community centers on the topic of caring for a loved one with dementia. Tonight, I’m scheduled to provide a presentation on caregiving and the holidays. As I prepared for this topic, I looked back at my last three Thanksgivings.

Thanksgiving 2011: My parents were still driving and splitting their time between their home and the retirement community. They got lost driving to my house. I lived less than 5 miles away and they had been to our home hundreds of times. I got a call from a motorist who helped redirect them 30 minutes after they were to arrive and then didn’t hear from them for 1.5 more hours! My Dad had a cell phone, but never used it and of course it wasn’t in the car with him. I went to pick them up at a gas station more than 15 miles from my house. The meal was cold and we avoided the topic of my parent’s getting lost. It was an awkward meal.

Thanksgiving 2012: My parents were no longer driving so I picked them up at the retirement community. My Mom was very anxious and ill-tempered. I gave her my baby book to look through as we finished getting ready for the meal which seemed to sooth her disposition. We all pushed away from the table with indigestion. It was an uncomfortable meal. 

Thanksgiving 2013: I pick up my Mom and we have a very pleasant Thanksgiving.
This years Thanksgiving was the best one in recent years. While my Mom is having a lot more difficultly managing through her day — wearing the same clothes, getting lost in her community, resistance to showering — she was dressed up and ready when I picked her up. She was gracious and appreciative of the home cooked meal.
I believed that my parents togetherness in many ways made helping them much more difficult to help. Now that my Dad moved on up to heaven, I wonder how much of strain they put on each other in trying to act as “caregivers”. I watched as my Mom struggled when my Dad’s energy and interests subsided, and then as he dealt with the cancer. I think for the first time, she could just enjoy the visit and the meal and for that, I’m thankful. Appreciated. 
Tell me about your experience with dementia?  Do you feel like it moved slowly, quickly, or somewhere in-between?

The wait for a diagnosis

pleasewaitIt took several months and varied doctors to find that my Dad has a tumor in his mouth. We started with the Oral Surgeon who has referred us to an Ear, Nose and Throat (ENT) specialist and orders a CT Scan. It takes several days before we can get appointments. Our first is to get the CT Scan.

This time I arrive with forms filled out. After a short wait they escort my Dad back to perform the scan. He returns a half-hour later. While we wait, I looked for local places to eat that would interest him. He has always been an adventurous eater. I find a local place that is well rated on YELP that offers empanadas. I tell him what I found and he agrees to try it with me.

We arrive and order a few with drinks. He tries his best to enjoy the food, but I can see he’s having trouble with anything that has texture. I realize that he should be on a liquid and soft foods diet. Eating is just too hard for him now.

I wonder how this could have progressed so far without anyone in his Assisted Living community noticing and even having it go undetected at his annual physical which just happened a few weeks ago. We now know something is very wrong and it’s going to take a few weeks to even understand it and learn if there is anyway to make him comfortable.

I sense a new lesson coming on. How will we manage cancer in my father who is also dealing with dementia? Vexed. 

Do we tell mom and dad they have no short-term memory?

One of the things that has struck me about this journey is that when the psychologist finally confirms both parents have no short-term memory – I wonder for a few moments if we should tell them.

For more than a decade, my mom always told us we wouldn’t have to worry about them; they were going to take care of everything. They didn’t want us to have to go through what they went through. Both of my grandmothers had some type of memory issue the family managed.

So now that we are struggling with how to help my parents since they don’t believe they need any help, I wonder what I will do to make sure I don’t repeat the cycle. I wrote myself a letter that my children can have delivered to me if I’m repeating the cycle. I have made several copies in case the first few don’t work.

Recently, I had lunch with a friend who said that his wife wants to make a video confirming that if she gets dementia and has no quality of life, she wants the option to end her life. She’s watching her parents languish and just doesn’t want that to happen to her. He wanted to know if MemoryBanc would store the video. I told him absolutely.

While the miracles of modern medicine have improved the quality of many lives – the fact that it also extends a life that isn’t worth leading must be the curse. While this conversation seems silly – it’s really a quite serious and important discussion to have now with your spouse, siblings and (adult) children.

I decide not to tell my parents. They won’t remember and who wants to really know their memory is slipping away? If I’m in the same position, the only person I want to hear it from is myself. My video session is in the works. Compelled.