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What is Dementia? {Dementia Diaries part 1}

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What is dementia? When I started our blog about 4 1/2 years ago, my intent was to share funny stories about living with my parents and grandparents as well as some of our home renovations, projects and tutorials. My grandparent’s health was pretty good then and everything just seemed to chug along. I have shared lots of stories about my grandfather and recently more so about his diabetes issues. We seem to have gotten that under control for the time being. Fingers crossed it stays that way!  It’s kind of a drag watching a loved one’s health decline. My mom’s mom also lived with us a few years ago and her dementia started in her late 80’s and was severe when she died at 92 years old. Like, she wouldn’t even go to the bathroom on her own. It was like she was a toddler. I pray my grandparents or parents never get that bad when they get older. One thing I haven’t really talked about is the fact that my grandfather is showing more and more signs of dementia. I mean, it’s kind of inevitable. He is going to be 87 years old this September so needless to say, his brain is old. There is a fine line I draw here on the blog about airing “dirty laundry” or “health issues” that would embarrass a family member or make them made at me. -ha. So I pick and chose wisely. Dementia though is something I feel that every person should be made aware of. I am sure many of you are well aware of the disease and the fact that many times, it comes on slowly and before you know it, it’s like a freight train ran your loved one over.

what is dementia {dementia diaries part 1}

So I have decided to start a Dementia Diaries series on the blog. I am sure many of you have experiences with loved ones that have gone through dementia or alzheimer’s and probably have great advice.  Sometimes it’s so easy to get wrapped up in your own life, I forget that we are not alone in this. We have so many loyal readers and so many of your emails have been super helpful over the last few years.  I haven’t quite figured out all the details on dementia and alzheimer’s.  Over the last year or so, my grandfather has been experiencing symptoms of alzheimer’s as well. If you talk to him later in the day or especially in the evening, he gets really mixed up and sometimes doesn’t know what day it is. It’s hard to say what’s causing what because when his sugar is really low, he’s a mess with his thoughts and low sugar is to blame.  Anyway, I plan on researching more about these two topics and will be attempting to understand why they happen and things we can do to slow it down. I wish there was a switch that I could flip on and make him young again. It’s hard to watch him fail. Stay tuned, more on this subject soon. UPDATE: See, Getting old and losing your independence / Dementia Diaries part 2.

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18 Comments

  1. I ran Alzheimer’s facility in Florida for 10 years. God bless you.

  2. Having really hard time getting this to work today. Too many cookies

  3. another great service you are going to provide by opening up your and your family’s heart/ thank you. there is a double challenge with the late in the day fuzzies since the sugar is also such a factor. MIL had this challenge minus the sugar BUT doctor office visits do not occur at the SUNDOWNER occurence so it was a muddle for awhile.

    1. Thank you Brenda :)Yes, it is so strange how their demeanor can change towards the end of the day.

  4. lynn thiessen says:

    Sometimes the days as a caregiver can be very long and at other times rewarding. My mom has been with me for the last 8 years. Original dx proved wrong or at least incomplete and her primary care missed many important points in drawing his conclusions. 8 years ago she was staged at mid to advanced alzheimers, obese, hypercholesterimia, hypertensive, and combative having multiple strokes. Her elevated blood sugar had been missed along with decreased thyroid function. Most importantly what was missed was a seizure disorder, peripherial vascular disorder, and severe reactions to the medications that had been perscribed for the alzheimers, hypertension, and hypercholesterolemia. Of greatest omission was alcoholism which was almost solely responsible for the cholesterol levels, depressed thyroid function, weight gain, macular degeneration, and hypertension. She has vascular dementia secondary to years of a liter of wine a night. She no longer drinks , eats frozen food saturated in sodium, and sits in a chair all day. Her labs and blood sugar have normalized and she has lost 62 lbs. She has good days and bad days. When the confusion hits we increase the daily walks to improve circulation to her brain. Her short term memory is forever impacted by her former drinking but her reasoning is better and her anger has abated. She no longer takes 22 pills a day. She takes one baby aspirin and one seizure med. We did dna testing to identify problems with drug processing pathways off cyp450 and know about drug to gene incompatability for scripting meds. She can not take any of the meds her former Dr had her on because they do not clear in her system. Those meds had her incorrectly diagnosed and staged. The testing was covered by medicare and was done with a cheek swab. She is now under the care of a gereatrician who spends as much time talking to her as to me. She now has hearing aids to capitalize on the senses she has left. My phone now has an app, epocrates, so I can check for gene to drug interactions before life complicates. There are resources to help you sort things out. It is worth the time researching anything that can help. Good luck and God bless. lyn

    1. Oh my goodness Lynn! You sure are well versed in all of this. Your mom is so lucky to have you and wow, what a lot you guys went through. It’s so crazy how meds can trigger different things and actualy cause more harm than good. So happy to hear that you mom is doing better and has things somewhat under control. I always feel so bad for the elderly people at the Dr.’s office that don’t have anyone looking out for them. My grandfather, more than my grandmother, needs me or my dad with him at appointments because he literally doesn’t understand. Good luck with everything and with your mom. Stay in touch ๐Ÿ™‚

  5. God bless you for starting this series. Dementia is a hard part of life. When my parents started going downhill more than 15 years ago, I wish I had had a blog to read. When I knew they needed day to day care I searched for answers everywhere. I know now that there are no straight answers for everyone. Each case is special. But just to share burdens and ideas would be helpful. The hardest job I have ever had is to see my parents just exist in a nursing home. My mom has to have constant care and my dad won’t leave her side so it has taken a toll on him. They are 93 and 94. In June they will have been married 75 yrs.
    It sounds like your Granddad is experiencing sun downing.

    1. Wow 75 years! That is amazing. Truly a blessing that they could spend all those years together. Sundowning is definitely what it sounds like for my gramp and the Dr.’s have said that is usually the start of it. You are right, every case is different. One reader just mentioned changing the subject when things start to get confusing for them. I try not to tell my gramp when he is wrong, I just kind of go with it. It’s no use to try and convince him otherwise. He just gets mad. -ha. So happy you left a comment and shared about your parents. I bet that is horrible to watch your mom in the nursing home but atleast she is getting the care she needs. Stay in touch and wishing your parents the best. xo

  6. Cheryl Siciliano says:

    Hi Jessica,

    I have been taking care of my Mom who has dementia. She has been living with me for 2 years.
    It can get difficult especially late in the day. This is commonly referred to as sundowners. My Mothers is mid to severe. She can not get her own meals or Take a shower alone. One thing that is common is the inability to regulate body temperature. This is tough because most days she wants 3 to 4 pairs of pants and so many tops she can not fit into her coat. It is a struggle. She has lots of sad moments. She is aware something is wrong but not sure what it is. The most important thing I do is deflect. Change the subject. Keep things simple for her. I know when she gets frustrated so I try to give her a simple job or put some old music on. Music is one of the best forms of therapy. She also goes to Adult day care and she has friends there. Our life reminds me of the movie 50 First Dates. Just wish we are in Hawaii!!

    1. So sorry to hear that Cheryl, that your mom is struggling so much. Thankfully at the moment, my gramp isn’t severe. He just gets confused and things mixed up sometimes. That is really interesting to hear about the music, I will remember that. My gram that lived with us (my mom’s mom) was severe too. She literally was like a baby. She wouldn’t go to the bathroom and couldn’t remember if she ate even if it was 5 minutes ago. It was horrible. Sounds like you have help with the adult day care which is good. Hang in there and stay in touch ๐Ÿ™‚ Thanks so much for sharing.

    2. Wow! I have often thought about that same movie as I have dealt with my mother who is now stage 6/7 of Alzheimer’s.

  7. Hi Jessica,
    Love your posts, this one is close to many of us. It’s tough and also trying not to be bossy or overprotective with my mother-in -law. . I have a similar living situation as you. But this is not about me. When I worked in the hospital we would sometimes get over-flow patients on our surgical floor. A few times we had elderly patients with Sundowners. One minute they seemed to have it together, but when the sun started going down they got very confused. Something to check out. My mother in law is going to be 87 in May. Quite active, I see times when she acts like a child and gets upset. Losing their independence is a tough one too. Hang in there. ๐Ÿ™‚

    1. You are so right about not being bossy or overprotective. My grandfather fought my dad for a long time but he now knows, it’s for his own good. My grandfather was in a bad way before Christmas last year to the point where we had to call 911 3x in 2 months and he kept falling. His blood sugar was out of control and it was because he was OD’ing on insulin. He will never admit that he was taking too much but he was waking up at 2am thinking it was the night and taking it again. Ugh. Needless to say, we give him his meds now. My dad isn’t as empathetic about his emotional well being on losing his independence, he just tells my grandfather how it’s going to be and that’s it. Sometimes my dad and I exchange words because I feel like my dad is too hard on my grandfather but I think it’s how my dad deals with the fact that “his” dad is failing. Anyway, I have an entire blog post going up about this today! ha.

  8. My mother was placed in a memory care facility in November. My dad was her primary caregiver (God bless him) and my sister took on a lot of responsibility for both of them since I live out of state (oh the guilt). Your grandparents are so blessed to have you in their lives and available to help them.
    One thing that helped with my mother was a calendar. But SHE had to write the appointments in or she thought they were trying to “trick” her. If she wrote it down then she believed it was real, even if she didn’t remember the appointment was made. In the beginning she would also use it as a diary to record who called, visited, or other event from the day.
    It doesn’t work for every patient, and may not work every day for the same patient. That is the nature of the disease.
    There are lots of tips on dementia and Alzheimer’s on http://www.alz.org.

    1. THat is a great idea Betsy! His forgetfulness comes in waves. It’s so strange. Sometimes he seems sharp as a tack and then the next day, he seems like he’s on another planet. -ha. He actually keeps track of his own blood sugar (on a chart) so it’s in his writing but for the most part, my gram still keeps track of all his appointments on her calendar but she is getting mixed up too now. Ugh. It’s a battle but a battle I am happy to be a part of ;). I wouldn’t have it any other way.

  9. My friend is only 72 and has Sun Downers. It’s so painful to see and hear about! The Alzheimer’s Association told my friend’s sister that Alzheimer’s and Dementia are the same thing since both are “dying brain cells”. Some cases are worst than others as I’m sure it affects people differently. God Bless you for helping with the care. My mother lived with me 5 1/2 years and in the end, she had dementia. She’s been deceased now 4 yrs and I miss her so much and would do it again in a heartbeat!!!

    1. Hi Anita, I am so new to these two terms but yes you are right, they seem so similar. It’s so strange how you start out in life as a baby and sometimes end up in that state before you leave this earth. So glad you had the opportunity to take care of your mom. I think being able to live with your parents when you are older allows you to see them in a different way. I am sure your mom loved being able to spend her last days with you :).

  10. Antonella says:

    Keep writing, it’s a topic that most everyone will deal with if they haven’t already