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Dementia is a Family Disease

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Ever hear the saying, “addiction is a family disease?” Well, Dementia is a family disease too. It affects everyone in the family and especially, those living with the person. It’s been a bit of an adjustment this past month living in our new norm with my grandparents and I won’t sugar coat it, it’s been a little rough. Although, there have been some funny moments too.

Dementia is a family disease

(dressed up for cowboy day at camp!)

My grandmother and grandfather have always had kind of a “vocal” relationship. -ha. My family is loud, chaotic and sometimes a little over the top. Growing up as a kid, it was not uncommon to hear my grandparents yelling at each other and a few F bombs be dropped by my grandfather. -ha. Although he doesn’t look very loud here does he ;).

Dementia is a family disease

I will never forget the time my mom told me that the first time she met my dads family (my grandparents), she was shocked and little mortified. My mom came from a very quiet conservative English family and my dad’s family, was the complete opposite. Loud, sometimes rude and full of whatever “language” came out of my grandfather’s mouth. My mom needless to say had a hard time adjusting to my dad’s family when she was younger.

Dementia is a family disease

My grandfather has vascular dementia with symptoms of Lewy Bodies Disease. They are not 100% sure if he has Lewy Bodies but he does exhibit some of the tendencies when agitated and nighttime confusion. Fingers crossed that the symptoms don’t get worse because from what the doctors have told us and what I have read, Lewy Bodies is the worst case scenario when it comes to dementia. My grandfather sometimes gets up in the night and seems to act out his dreams. For example, last week my mom found him wandering around in the family room looking for the washing machine and he had all my gram’s clean clothes ready to re-wash them. He told me the next morning he was dreaming that he was helping his neighbor who had a flood and all their clothes got dirty so he was going to wash them. Apparently, this happened in real life (like 60 years ago). He laughed when I told him my mom found him looking for the washing machine with my gram’s clean clothes at 1am. He said, “oh geez, don’t tell gram I messed up her clean clothes!” -ha

Sometimes ya just gotta role with what the dementia disease monster decides to “drop off” at any given moment. There are some tense times for sure when my grandfather gets agitated but the funny times are really funny ;). You can read more about my gramp and dementia on our dementia diaries page.

 

 

About The Author

What started as a hobby, Jessica’s blog now has millions of people visit yearly and while many of the projects and posts look and sound perfect, life hasn’t always been easy. Read Jessica’s story and how overcoming death, divorce and dementia was one of her biggest life lessons to date.

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18 Comments

  1. Rachel P. says:

    Jessica, this is a wonderful article about your Granddad and the family members he lives with. You are doing a wonderful service by having him in your home. You are definitely earning your wings for heaven. I’ve enjoyed keeping up with your Blog, and needless to say love your decorating style! Keep up the great work!

  2. I’m sorry your family has to endure this. Be strong and ask God to heal your grandpa. I’ll keep your family in my prayers. God Bless you Jessica and your family.

  3. Jessica,
    I too have lots of empathy for you and your family. I also think it is wonderful that you are all living and working together as a team in your Grandfather’s care. My Mom, who possessed an incredible “Joie de vivre” passed away a year ago at 92. She also had a dementia that was progressing rapidly. My 96-year old bed bound Dad and disabled sister now live with my husband and me and honestly it is working out very well, with the incredibly valuable help of our beloved, responsible, skilled Care giver.

    In our case it got to the point where my Dad needed a non-family caregiver to tend to his personal hygiene needs and I needed the help with so much pertaining to him and my sister as well. We were not equipped physically, emotionally or skill wise to tend to my Dad’s needs competently without drama. We chose this route, keeping him close with us at home, instead of a “nursing” facility. I know this doesn’t work for everyone, but it may be something to consider as things progress. Finding the caregiver who fits well with your Grandparents and the whole family is a process; one that is well worth the trial and error involved. The best part is that it allows your family to be “family” and the caregiver, who is one step removed, with no emotional triggers, to lovingly take care of many parts of their care. I’m just sharing my personal journey and experience with, as you expressed so well “dementia as a family disease”.

    1. Hi Michelle! So sorry to hear about your mom. That is so great that you are able to help care for and provide support for your dad and sister. Sounds like you too, have your hands full. My aunt (my dad’s sister) comes 4 days a week now from mid afternoon through early evening to help with my gramp after camp which is a HUGE help. My gram is wheel chair bound for the most part so she can’t really do much. It’s great having my aunt help with their laundry, meds, showers, dinners ect. We also have another lady (my aunts friend) who comes on the 5th day during the week. You are right, it’s so important to have a team if possible b/c seriously, I feel like I live in the looney bin sometimes and that I am headed to a real one soon myself! -ha. Stay in touch please and good luck with your dad and sister ๐Ÿ˜‰

      1. It is great Jessica, that your Aunt and another care giver are helping out, especially since I think you said both your parents are still working and out of the house much of the day. I am so happy to hear YOU have the help; that said meltdowns are inevitable; at least they were for me. Everything in your life is changing including all the dynamics of everyone’s relationships with your grandparents and theirs with each other. I found that to be so difficult and found myself feeling like I was living in both a fog and whirlwind at the same time.

        Humor was and still is our best friend every day. That and acceptance of what is our new reality. Painting (not the artist kind, but the up-cycling kind) is my passion and my “yoga”. I love the process of restoring something old and ratty into something new and beautiful and it feeds my soul. Whenever I feel my stress level rising, I paint. As my husband says, I will paint anything that doesn’t move. I’m sure your DIY projects serve the same purpose for you and hopefully that will serve you well during this evolving time in your family’s life.

    2. Michele, wonderful suggestion and option for eldercare!!

  4. Juanita in OH says:

    I feel that you are the family glue! Under many different types of stress you always hang in there. You are a wonderful provider for your entire unit. You are also a consummate benchmark for others to strive for. Know that all of your friend’s in Blog Land pray for all of you and think of you and the family everyday. TFS and warm hugs to all.

    1. OMG I think that is one of the nicest things I have heard in a long time! ha. You are too kind ๐Ÿ™‚ I appreciate your kind words. I guess because we have all lived together for so long, it’s just kind of normal. I don’t know. Although I did have a huge meltdown a couple days ago! ha. Humor, laughter and lots of love will power us through ๐Ÿ˜‰ Thanks again sweet Juanita!

  5. Thank you so much for keeping us posted on your Gramps. I am so sorry that you all have to go through so much. You do it with such grace and humor… love you! Praying for you guys.

    Take care,

    Trish

  6. One thing I haven’t heard you speak about and that’s how your son is reacting to this. I remember when we tried to have my grandfather live with us when I was about 6 (now about 60 years ago!) and how traumatizing I found it. I don’t believe I ever said anything to either of my parents. Your son has lived with your grandfather for years now, so I’m probably being paranoid based on my own experience…just wanted to mention it. You all are saints.

    1. It’s funny you say that because he is experiencing some changes as he has to “share me more” -ha. Now that my grandfather needs 24/7 care, it has changed the dynamic a bit in the house and for the most part, my son seems to just go with the flow but I know it’s a big change for him. Things are so much different now since the beginning of the year with my gramps sudden decline. You are so right to bring him up because it definitely effects him. We try to shield him from a lot of the “spells” my grandfather has but I know he sees and hears a lot. I talk to him a lot about how the brain changes when you get old and that’s why gramps gets confused a lot. He asks lots of questions so I am hoping that is helping him understand it all ๐Ÿ™‚

  7. Jessica,
    I just watched a fascinating news story on our national news network in Canada. It was about something called normal pressure hydrocephaly. You can get information about it at ctvnews.ca. Hopefully you can access it from the U.S. It’s about people who are getting misdiagnosed with dementia and who could have their condition reversed with a procedure if diagnosed early enough. The main symptoms are memory loss, trouble walking and incontinence.

  8. I just found your website while looking for a way to change the look of our brass fireplace. Love when I stumble on things.
    We too are living 4 generations under 1 roof. Decided to do this in December to take care of my mom. Some of our friends think it is the best thing in the world, others think we are crazy.
    It is definitely a new lifestyle for my husband and I, and actually for everyone. We range in age from 16 months to 84 years old. The house is totally filled with so much love, even in the craziest of moments.
    This pass week my mom has had a sudden decline. A new season of life for me as the number one 24 hour care giver at this point. We will be adding on help as we walk out the steps of the journey.
    Thank you for sharing, I will be keeping up with your blog.
    Barbara

    1. Sorry this is such a late reply! Your comment didn’t end up getting approved in my que for some reason so I just found it! This is so great that you are 4 gens under 1 roof too! I love hearing from others and how they do it. Yes, it’s not easy when they need 24/7 care, in fact, it’s a little crazy. We now have 4 different people who work here throughout the week and we have recently started to hire out for overnights so that we can go to our camp during the summer. It’s definitely a learning process and loads of stress for everyone involved BUT it’s better than the alternative….a nursing home. We hope to keep my grandfather home as long as possible. Hang in there and good luck! Stay in touch ๐Ÿ™‚