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Dementia: I Hate You Part 3

I am going to take a little detour in my Mom’s(Sally’s) story and talk about the disease itself. Everything I will be talking about here I learned from doctors and the internet….

Mom At her Nursing Home

Mom At her Nursing Home

Picks Disease is much worse than it sounds and harder to get info about than most of the types of dementia. No one would ever pick this decease for themselves or their worst enemy. When I was just getting into this with my mother I really knew nothing about dementia or Alzheimer’s disease. I was not sure if one disease led into the other nor did I have any other real way to understand the disease. I really thought they were the same thing and I find most people really do not have a true understanding of what it is. After many visits with doctors and nursing home nurses I think I have a good grasp of what it all means.

First question – What is the difference between Alzheimer’s and Dementia?

Alzheimer’s is an actual disease and it is one of the causes of Dementia.  Alzheimer’s is caused by a protein that develops tangles and plaques in the brain that cause the cells to no longer communicate with each other. In advanced cases the brain shrinks.

Dementia is not actually disease but a group of symptoms. These system cause a person to find it difficult to do many mental tasks like remembering things and clear reasoning skills. If a person was always a conservative person when dealing with finances you might notice they make some very opposite risk taking decisions. Early on my mom all of a sudden decided to get into some day trading and bought some Gold that was “held” overseas! SCAM! She was a financial person, she had her series 7 and she was also all about putting her money in SAFE investments. Her financial person even told me (later on) that mom was doing things that were not her norm. (Big symptom)

Second Question – How do you know there is something wrong with your Loved one?

It seams like the disease creeps up on you. If you live with someone full time you might not really notice for quite

a while. It might even be something that is noticed more by the friends of the person with dementia. The disease can start with forgetfulness, time management, and getting lost easily. My mom (Sally) was great at coping with things and still is in her limited capacity. She would cover forgetfulness with a joke, set an alarm to be on time and use her GPS even when it was her ride home from work. She was always super controlling/a perfectionist so even when she was falling apart not many would recognize it. It was her friends that noticed first, they noticed that she would lose words. She would be out for lunch and want to order french fries but could not come up with the right word. She knew it was the wrong word (fingers) but could not find the right one. At my Step Fathers funeral she read something she had written about him being a happy (camper) but she had written (cannibal). Unless we did not know Marvin very well he was not a cannibal! It was not until the depression of my Step Father dying kicked in did it become very apparent that mom was really not behaving normally.

Third Question – What is Pick’s Disease

I had so much trouble finding a good answer to this question. Its sciencey name is Frontotemporal Dementia. The following paragraph of information I am taking straight from a website called NIH National Institute of Neuralogical Disorders and Stroke:  (Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century.  The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD.  Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex.  These designations will continue to be debated.  As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language.  The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation.  The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms.  Spatial skills and memory remain intact.  There is a strong genetic component to the disease; FTD often runs in families.)

Wow… Scary stuff, especially the last line that states that is runs in families! I don’t know of anyone in my mothers family that has had dementia, I hope it does not start with us! Lets just say that I spend a great deal of time dwelling on this information. I think long and hard about every instance where I have forgotten a word or name of a show/movie/car etc…. I would bet that anyone who has a family member with any type of dementia has the same worries that I do. I worry most for my family… You know the WHAT IFS!

Fourth Question – Is there a cure or treatment?

Nope…. They say doctors are practicing medicine for a good reason, they don’t know what to do about dementia. Some things help slow things down and some things soften the symptoms but a cure? Nope! The progression of Pick’s disease is quicker than some types, especially when you keep in mind the fact that it hits much earlier than most types of dementia. a person with Pick’s disease generally has between 2 and 10 years. So if a person gets hit with this bus in their 50s they will most likely die in their 60s… Thats not very old at all, it seems younger and younger with each passing year! My mother is one of the youngest people in the nursing home she is in. She is 66 where as everyone else is 75 and older it seems.

Anyway I will get back to my mom’s story in Part 4! I felt it was important to define the disease before going on with our journey!

 

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Dementia: I hate You! Part 2

Dementia: I Hate You (part 2)

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I hope this story can help others who are going through this!

I also hope my telling the story helps me as we all have doubts about if your doing the right thing or not!

Going to see the doctor was very peaceful. My mom loves her Doctor and I found her to be wonderful as well. My only complaint about the wonderful Doctor Barry is that she gets all up in your personal space. This is from dealing with older people on very stressful topics for years, no doubt. Mom however thrived being that close to her and felt very comfortable with her. She held her hand and looked right into Mom’s eyes the whole time they were talking.

Dr. Barry then asked some questions and also did a test with mom called the “Mini Mental” test. This test was eye opening to watch. The doctor asked mom questions that anyone would know easily and then had her do a copy a picture type of an activity. It was interesting that my mom could not come up with the names of simple objects but would try to cover with humor and laughter. The Doctor held up a blue paperclip and asked mom what it was but mom could not come up with the name so she called it a blue thingy ma bobby and mimed what it did. Mom did pretty well on the test but I guess, but missed enough to go on to the next level of testing.

Around this time because of all of my mothers needs I lost my job. My boss made it sound like a reorganization but I know it was because I needed too much flexibility and had only been working for him for a few months. Not long enough for him to care about my troubles one way or another. Oh well I needed to be available to mom anyway… She was our priority.

We were given an appointment with the doctors at our local hospital. The second level of testing was just a more extensive version of the Mini Mental test. The only real difference was that it included some balance and dexterity testing. She had no balance at all, but I don’t think she ever did. I think I have seen drunk people do better walking a straight line than she did. So after Dr. Barry looked over the new reports we were then given an appointment at L&M in New London.

In the time between doctors appointment I talked mom and my husband into doing a little house shopping and started searching for the perfect new home for all of us. Now most people would have had their mom move in with them or moved in with her but neither of those options would have worked. She refused to live with us because she would not be able to have her own space and because our house was not up to her standards. We could not move in with her because my husband would not be able to move that far away from his daughter’s mother so that they could continue to share custody of Hannah. SOOOO we needed to find a house that my mom approved of and that was close enough to Hannah’s mother. Fun Fun! It’s hard to remember to add in that my husband and I had to decide that we would leave/sell/rent our house and change our daughter’s school and everything else in between. We had lived in our home together for 5 years and he had lived in it for 5 years before that, so it was a bit of a painful decision that he made with out a backwards glance. (An angel he is!)

On the night before we were supposed to go house hunting at about 9:00pm my mother drove up to our house totally unexpected. She wasn’y supposed to be at our home until 9:00am the next morning. Mom thought she was on time for our house hunting fun. Hmmm… Its pitch dark out side and she was thinking it was morning. She had fallen asleep for a nap and woke up thinking she had slept all night. She got ready to come over thinking it was morning and drove to our house in the dark with out going hmmmm… something is amiss here! It was then we knew we needed to expedite things. Trying to explain things to her in a non-embarrassing way was difficult but we got her settled in to sleep on the couch and went to bed ourselves even though it was a little early for us. We did not sleep well but stayed up talking about the situation and listening for anything out of place in the house. Vigilance turned into a new way of life for us.

House hunting was a real nightmare because nothing was good enough and she couldn’t remember going to look at the houses not to mention if she liked one or another! Her friends were making it worse because I was moving her out of town, they made her upset time and time again by talking to her about it. They also called me to ask why it had to happen so soon and why we could not just live with her and a million other things. I know I had it easy in the sense that I did not have siblings to argue with but I really wanted to hang her friends by the toes a time or four. I must say that I truly love and respect both of my mom’s best friends. I used to call them my second mom’s and hopefully treated them with respect for the most part during this difficult time.

I have no idea what the specialist doctor’s name was but he was fantastic. We were lucky to get him for sure. He usually did not see out patients at all so our Doctor pulled a few strings to get us into see him. Mom was chatty the whole time we were waiting for the doctor but, I could tell she was feeling a little out of sorts this morning. I am not sure she really knew why we were going to see this doctor. All I know is what he had to say at the end off the testing changed everything.

This doctor asked question after question for almost three hours. He was trying to tire her out to see if her memory got worse as time went on. I don’t know that it did get worse during the testing. He asked the same questions at different intervals and she would answer them wrong more often than not. She knew who I was most of the time but she never knew where we were or why we were there. She always tried to cover and make light of what she was forgetting. She would say things like “Why would I care to know” or “everyone forgets that” or “wow I knew that a minute ago” or “oh it’s on the tip of my tongue. It was also interesting on how much she would look to me to fill in for her. I guess this has been our game for a while and before that it was what my Step-dad did. She would start to answer and then turn half toward me hoping I would jump in and save her. It was painful to not be able to jump in during the testing. My job was to let her try to answer and be there to clarify if she was right or wrong. Talk about feeling like a traitor. I had to point out every time she was wrong and I know that just made her memory worse through all of the embarrassment and frustration she was feeling.

By the end of the testing the doctor somehow had his diagnosis. He said that without a doubt my mother has Picks Disease. Which is one of the most awful types of dementia. Mom listened as he spoke but I am not sure what she understood. I did unfortunately understand and was just a little more than totally devastated. I won’t go into the features of Picks disease this time but stop here for now.

Except to say that this doctor help me by telling mom she could no longer drive and that she needed to be living with someone sooner than later. More on this in part 3.

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