Yes! I am an adult family member who has cared for two parents. My parents had complete estate plans in place and did everything their financial and insurance advisor suggested. Helping them was initially incredibly difficult for a variety of reasons. Many financial institutions create roadblocks when you need to use the Durable Power of Attorney–I’m still waiting for Wells Fargo to accept mine on my mom’s CD account.
Any change in behavior by a loved one should start by a visit to the doctor. There are a variety of things that could cause changes like medication, lack of sleep, or a variety of medical conditions.
My parent’s both were eventually diagnosed with dementia. My mom’s symptoms started to present themselves to me when she was in her early 70s; I started to notice a change in my dad when he was in his late 70s. Their needs changed my life in unexpected ways. If you have suspicions, you will find information and suggestions on how to deal with the possibility of dementia by following the blog on DealingWithDementia.org. You can visit this page for a deeper explanation of dementia and its many forms.
My mom dismissed my concerns when I went to the doctor with her. After managing as the medical advocate for both of my parents, I know and have had many doctors and nurses confirm that family is the best resource. Often, dementia won’t be diagnosed until later in the disease progression and early treatment could help slow the advance of the disease. So getting an early start is beneficial to everyone.
If you are noticing changes, be mindful of what you are seeing. A loved one could be experiencing something that is very treatable.
Looking back, I now recognize so many issues and signs that alerted us to mom’s dementia, but it was a long difficult road to even get to a diagnosis for a variety of reasons. The biggest one being my mom and dad fought to keep their independence fiercely. Ignoring issues won’t make them go away and letting them linger may cause more harm than good. It will also help to involve an estate attorney so you will have the tools to help mom/dad if they are no longer able to help themselves. You can also have a discussion on they can guide the many choices that need to be made about how they want to live … and die.
My 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.
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.
My mother has bestowed on me her ultimate trust by handing over the bread bag she had filled with her dirty underwear. The event is both devastating and rewarding at the same time.
A year ago, my Mom would have at least one thing she said on each visit that was nonsensical but hit my funny bone. I’m now hearing clusters of conversations that don’t make sense and it’s not so funny anymore. I recognize the significance of these changes and wonder how long it will be until we can’t have even our limited conversations.
My mom and I walk into her bedroom to connect a new phone. As we are talking my Mom notices me looking at a bread bag near the dresser. Not only is it oddly shaped, food in the bedroom is something that was never tolerated by my mother so it immediately drew my attention. She tells me it’s her dirty underwear.
I know that my Mom has been hand-washing it for several months now. I previously shared the story about my Mom’s complaint that someone was stealing her underwear — she had just hidden them from the Assisted Living staff that would pick up and do her laundry. My Mom had forgotten she hid them all under her mattress and assumed someone stole them. I get not wanting someone to wash your underwear – for a period of time – the nanny that was living with us would do our laundry. The idea of someone else washing my underwear initially bothered me — but I quickly got over it when I realized how nice it was to have someone wash, fold and put away my clothes.
I ask my Mom if she would like me to take her clothes home and do the laundry. She asks “Will you wash my underwear?” I respond “Of course” and she hands over the bread bag filled with underwear. I look back on many of the stories where my Mom pushed me away, even when she needed the help. However, I see the cost to earning her trust was the loss of my Dad and a marked decline in her cognitive abilities.Entrusted.
Yesterday, I stopped to answer the request of my Mom’s neighbor who was sitting in the hallway calling “Hello?” waiting for someone to answer. I have talked to this neighbor before and I know her name. I said “Hello” in return. She asked me “Where am I? Should I be doing something now?” My Mom’s neighbor has no memory and is constantly getting lost in the hallway. As we are chatting, she asks me how I know her. I explain that her apartment is next to my Mother’s. “How do you know it’s my apartment?” I tell her that her name is on the door. She asks me to show her and I walk her to the door of the apartment she’s been staying in for at least ten months. She turns to me and then shares that “Oh, I woke up in that room and had no idea where I was.” I smile and point out some of the pictures of her hoping that will help her recognize something in the apartment.
Of the three women in Assisted Living I know with dementia, they are very different. One has trouble finding words and putting her sentences together, but seems to know what she wants to do; a second has no idea where she’s living or what she should be doing, but asks very logical questions; and my Mom who seems to be between the other two women and usually writes up her grocery lists and makes her lunch everyday, but can’t remember how to figure out what day of the week it is even through we have tried to integrate that day clock I bought her almost two years ago into her problem-solving skill set.
The varying ways in which dementia impacts each victim still confounds me. I could be seeing three similar dementia’s in different stages, but I believe the words I was told when I began this journey several years ago. “When you have met one person with dementia, you have met one person with dementia.”
What I have learned is that no matter what stage or type of dementia they have, the ego inside demands to be recognized. I will always treat them as I would expect to be treated. Resolved.
Some simple things that have severed me well, some that took time to learn:
Approach with a calm, friendly manner.
Explain what you will do before you do it. “I’ will walk you to your room now.”
Respect the individual and don’t treat them like small children (You can debate me on this, but these are my rules!)
I cared for two parents with dementia and in many conversations, I have someone share “My Mom repeats herself, but she doesn’t have dementia.”
I started in the same place, before Mom was diagnosed. You just notice something is different, but you don’t know what it is exactly or what, if anything, you can do about it.
I noticed that my Mom would repeat herself, and my Dad was less talkative and seemed depressed. Both of my parents had changing behaviors which is a signal that something is wrong. When my parents were first diagnosed, I was confused about the difference between Alzheimer’s and Dementia.
The common office test given is called the mini–mental state examination (MMSE) or Folstein test. It’s 30 questions and is really only going to capture someone who is moderately impaired. The only true early detection system will be your own observations of someone who you know well. My parents scored in the high 20’s over the course of two years – even when the administering doctor could tell something was not cognitively right with my parents. A better understanding of their strengths and weaknesses was revealed when they were given a Neuropsychological Evaluation. This test takes around 2 hours.
I hope you will consider that any change in your parents could be an early warning signal to future more complicated issues — not just cognitive. Please know there are many other things that can cause memory loss that can be easily treated. Start with a visit to the doctor and join them. The more you can do early, the better off everyone will be. Warned.
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