ALZHEIMER’S IN PASSING
IS ALZHEIMER’S HEREDITARY?
WOULD YOU WANT TO KNOW IF YOU HAD IT?
JUST QUESTIONS TODAY AND NO ANSWERS!
Pt. 10 The conclusion of the caregiver series “How We Got Here” will return next Monday, September 1, 2014
I guess my nightmare and my daughter’s pregnancy has been on my mind a lot yesterday and today. Sorry for the melancholy posts, but sometimes it’s not enough to just Appreciate the good, you have to fight for it too!
Much has been said lately about Alzheimer’s being hereditary and about new tests possible to see if you will get Alzheimer’s in the future.
Is this the legacy that I will pass on to my daughter like a well worn photo album or and old piece of furniture? Should I include it in my will? Maybe add a caution “Contents Under Pressure”.
How do I prevent that? That’s what I want to know. How do I keep from being a burden? How do I keep from possibly passing this horrible disease on to her? This sweet, shy girl (normally, until pregnancy hormones took over anyway) with my looks and her daddy’s big heart. My baby who will soon give birth to her own 2 babies. Is this the gift that keeps on giving?
By giving birth, to this daughter that I wanted so bad, have I sentenced her to a life of uncertainty, but certainly horrible pain?
Please, someone tell me no. I find myself looking at her as she is glowing in pregnancy with those 2 precious little babies.The ones that she wished into life and then moved Heaven and Earth to get. I want to tell her I’m sorry NOW, for the untold pain that I will possibly lay on her shoulders at some point in my life. That I’m sorry if I am ever to become a burden that she will eventually have to deal with.
For you see, I know what this life is and I wouldn’t wish it on my worst enemy let alone my child, the mirror image of myself. This child that I would gladly give my life for.
Would you want to know if you were going to get Alzheimer’s in the future?
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!
I think I would want to know, just so I could be prepared. Additionally, I’d do something with it like Vikki Claflin is doing with Parkinson’s, and write my experiences to share and raise awareness.
That’s true Lizzie and that’s what I try to do regarding Alzheimer’s and Feltys syndrome but would you make different choices regarding having children vs. not?
I don’t know if I would want to know if it was hereditary. It sounds like a terrible disease and one that is really hard to prepare for.
I wonder simply because it is hereditary. Will I automatically pass it on to my children or will they be safe. Will they be caregivers or need one.
I think I’d want to know if I was going to get it. I don’t know what I’d do with the information, but somehow I feel like I’d prepare as much as I could.
I feel like being prepared is half the battle. When I think about how much time we spent in the dark. We could have been learning and preparing.
You are a strong and caring woman with so much love and frustration in your life with your own worries for your mom and daughter. My prayers are with all of you, always.
Likewise Cathy I know this is not a journey I make alone. I believe we share this long walk! You also have my deepest admiration and my prayers!
The problem is there is no way to do anything about it yet, so knowing is a big weight that can’t be relieved. My father had it, the only one in his family. So every time I can’t find a word (yesterday it was hyperbole) I panic a bit. Especially when my 85 year old friend lost a word for the VERY FIRST TIME last WEEK. sigh.
I have the same panicking problem. If I misplace something or forget something else it automatically causes butterflies.
Alzheimers runs in our family as well. I am always concerned about putting the burden of my care onto my children as well as whether they will have to suffer. All we can do is try to enjoy the time we have. She will have two beautiful babies soon to help take your mind off all the things you worry about.
Well said Jennifer, well said.
My Mom passed away 1 year ago after a brief battle with ALZ and a pneumonia that got out of control. She passed away on May 5th and I am grieving still that loss. I send hugs to you because this is a rough road. I know it is hereditary. I don;t want to know if that is how I will end my years on earth. I don’t want to know. Simple as that. I choose to live now and seize every day and if I knew that information I would simply worry more and feel it overshadowed all of the happy moments in the immediate present.
I believe I quite agree with you Paula. I am so sorry for the loss of your mother. My prayers are with you and your family.
Goodness, I never even gave a thought to if Alzheimers was hereditary or not…but I can see why it would concern you!
I can’t say I overly thought about it much. After I had my really bad nightmare I thought more about it and I guess with my daughter carrying her babies the thought has come into the forefront but there is nothing much to do about it. Thanks Kristen.
What a tough question to have to ponder. Please know my thoughts are with you, your daughter and your precious grandbabies!!
My grandmother died of Alzheimer’s and I think the worst part of it as her granddaughter was seeing her before the disease fully took a hold of her. It was heartbreaking to see her come back to the world for a moment and know she knew what was happening.
Personally, I would not want to know. I might feel differently if there was something I could actually do to prevent it, but since there is not, no.
Thank you Kathy. That is something that happens often in our house that look of fear and desperation for that split second when she realizes what is going on. Then another moment the look is gone to replaced by that glazed over look. Breaks my heart everytime!
I’m not sure if I would want to know or not, that’s a tough question to answer at the moment. My thoughts are with you.
I change my mind on any given day Lesley!
What a hard questions – my Gran had Alzheimer’s we lost her early this year, I just hope in time we can find out more about it awful illness.
I am so sorry to hear about your grandmother Sarah (that’s also my daughter’s name). My prayers are with you and your family. I hope you are right and maybe one day there will be a cure.
My grandma i think showing early stages of alzheimers. so this is a great article!
So glad to help out Alexandria! That’s why I am here. I hope you take a look around and if you have any questions let me know. If you want to talk more privately feel free to email me at rm29303@gmail.com
Babies are love! I am just thrilled for you. I very much enjoy Still Here by Ram Dass because he encourages me to live in the now. I tend to review hurtful things from the past and worry too much about the future. His book looks at the power of now for older adults, and I always get a feeling of calm when I read from it. Hugs to you and your beautiful, growing family. So exciting!
I haven’t read this yet but am definitely taking note of it. Sounds like something I should check out. Thank you Karen.
Yes!!! for sure I would want to know if I was a candidate for Alzheimers…. Then, I would be trying to find any way I could to slow it down or possibly stop it.
That’s a great outlook Terry! Thanks for sharing your thoughts!
I think it would be helpful to know so that we can start treating it or take other measures early on.
Some days I totally agree with you Heather! Thank you so much!
I think I would want to know – for many reasons. But don’t beat yourself up about your daughter and future grandchildren. Everything about parenthood is an unknown, and there are always things that can go wrong, but many, many things that go right. We just have to move forward and hope and pray for the best!
Thank you Lana for your understanding. You are absolutely right! There are so many things that can happen in life worrying about that seems pail in comparison.
I’d want to know if it was hereditary to prepare myself, it’s so scary.
It is definitely that Chrissy! Thanks for sharing your opinion!
I wouldn’t want to know. I wouldn’t want an urgency to make each day something extra special. I would just want to enjoy each moment at a relaxed pace and appreciate it for what it is.
This is so true of alot of things Alice. We all need to take a page from your book! Thanks for sharing!
I never thought about if it was genetic or not. That is a question to ponder.
I think about this sometimes other times there is just to much other stuff to worry about. Thanks Krystal.
Such a hard question. If knowing could help you prevent it or prepare for it somehow, that would be one thing. But to know and not be able to do anything about it? I’m not sure.
That would also be my dilemma. I have enough struggles in the here and now I don’t want to have to worry about the struggles of tomorrow if I couldn’t stop them from coming anyway.
im not sure how knowing could help at the moment being there is no cure for it.and that weight of a life you have wtinessed with your mum might just be tto much and make you own life worse off.even bring on the symtoms sooner!!and other illness that would bring different but similar devasteding effect of depression and mental illness etc.would this be any better.
but to be prepared.mayne the thing to do right now it to be prepared anyway.if we cant act or know whether we wiull get such illness could we all just get dam prepared anyway.we need to know about these illness whether we get it or not.there are so many others suffering we can help eacthoer by learning more to understand more.than in ourselves wiht housesing future wills and accounts to just get things sorted incase.that way the life we do live will be more peaceful anyway.
to live with the knoweldge ill die like my family did with the desease i think would make me a terrible mum in some ways.id hurt my child by needing to love her too much,show her too much,tell her too much haha.
though living with the weight of caring.i dont actually think sometimes i could be more prepared becasue when i fear tomorrow it hurts more.where as if i get myself calm in the now and think ok this is here i am here this is the now this is it right now me and her and my family this is the life we have i can get on with it more.i can fight more becasue im here now.where as if im trying to get through tomorrows fears aswell it just get too much.
your daguthr loves you.like with cancer or depression or ohter illness’s we dont exepect some of thre sheer pain that will come.but in our lives together there has been sheer joy too right.remember those moments you and ur daguihter have had and savour any more to come.dont fear lsing that or being a burden.love finds a way to be stronger than anything.she woint hate you or feel why didnyt you stop this or why do this to me.they will be fleeting thoughts of days but they wont be the real ones.the ones below the surface of love and enduring strength to look eacthother.
your doing such a brave wonderful thing everyday.its not fair at all but look at you your an inspiration a wonderful kind caring giver.you can do this.you can.
p.s if ive made no snese or offended take it away.there was NONE MEANT ABOVE.my thought just sometimes dont transport to words espceically when i have such emotional feeliong in there too.xx
Kate, you definitely didn’t offend me and I can tell you are very passionate about this. The things you said actually make perfect sense and I want to thank you for sharing your thoughts with me.
This is some very important information. Many people are not aware how different conditions could have genetic correlations.
It is a very scary thought. In my family alone it could be the Alzheimer’s Disease from mom, Felty’s Syndrome from me, Heart Disease from my father who died at 46 or my husband’s family who has battled cancer many times and lost.
If I knew there was a chance I would want to know. I rather be prepared than worry about if it could happen to me.
I have decided to prepare as much as possible to protect my family but not let it consume me or my thoughts. Thanks so much for sharing yours with me Nolie! I always find you insights very interesting.
Hopefully by the time the babies are adults there will be some clear science on the disease. It is not a sure thing that your gene pool will have it. Of course it is scary. My Mother, 92, did not recognize my sister yesterday but her 95 year old sister and my sister went out to lunch and shopping. Who knows!
This is the outlook I need to carry Haralee! It’s amazing how different people even in the same families can be. Thank you for sharing this with me, it is actually a very big help!
I would always want to know. To prepare myself, and my children. It’s really important to stay informed!
I agree Jeanine it is very important to stay informed but I also think there is a way to be over-informed. This sounds confusing I know. This gives me a terrific idea for a related post. THanks for sharing your ideas with me!
The whole idea of it scares me to death. I don’t know if I could hear knowing.
This is how I feel MOST days Liv! THanks for sharing our ideas!
I don’t think I’d want to know now. However, if I had children, I would definitely want to know for them.
This is my concern. Not really how it will affect me per say but how it would affect my children in the long term whether from the disease itself or from caregiving either one. Thanks Tami!
I don’t know if I’d want to know. Part of me would spend so much time worrying about it, I won’t enjoy the now. I already struggle enjoying the now. They say that music is helping with time/space understanding. Like how we reminisce about high school when we hear a great song from our day. I wonder how much is true.
This is a very good question April! There are definitely songs that take me back to those days even if they are way long past. I wonder if that would be something useful to work on here. Thank you so much April you have given me alot to think about!
I would want to know. I would want to try to prepare the best I could before it got too bad.
Good points Theresa thank you so much for sharing your ideas.
I think I would also want to know so I could be prepared. Though, I suppose there isn’t really a way to prepare for something like that.
There are ways to prepare I would think although it would be relative to care, financials, POA that sort of preparedness. This gives me another great post idea. Thank you so much.
Beautifully said. I will have to put some thought into this question. Not really sure how I feel about it but I am thinking I would want to know. I am the kind of person that likes to be prepared.
I am too Pam. We always go by the 6 P’s (I actually heard it on a TV show but we have adopted it in our house) Proper Preparedness Prevents Piss Poor Performance. I usually add a 7 since I say this over and over to my husband whose name happens to be Patrick.
I always love your posts, and I’m always so grateful that you’re willing to share your journey. I had a great grandfather with this horrible disease, so I know how difficult it is on the people around them. Stay strong!
Why thank you very much Ben! I love to hear from people who like my posts. I hope you will return often!
I don’t think I would want to know. Life is so hard at times, and you might end up getting some other horrible disease before this one, so why worry beforehand?
This is something very important to realize and I hadn’t actually thought about it before. Alzheimer’s isn’t the only ugly, destructive and terrible disease. There will definitely be another blog post discussing this. Thanks for sharing you ideas Carmen!
Unless there could be some way to prevent it from happening, I don’t think I’d want to know. However, that doesn’t mean I wouldn’t want to prepare and plan in case it did happen.
I think that is the trick Sharon! Don’t overly worry but always be prepared come what may! Thanks so much!
I go back and forth depending on the day I am having. Some days I would and some I definitely wouldn’t.
I’m not sure whether I’d want to know or not. The truth is that if there were something I could do about it I’d be more inclined to want to know. But if there were nothing I could do about it, it would just be a heavy weight.
I feel this way most of the time Karen most of the time I am okay with it, then I look at those ultrasound pics of the little ones coming and then I start to worry a little. That’s my nature.
I would definitely want to know because it would give me a chance to make certain plans.
There is that. This idea has pros and cons on both sides. Thanks for sharing Melanie.
I would want to know so that I could somehow trap memories before it sets in. But at the same time, knowing what’s coming is hard too.
That’s an interesting idea Melissa the idea of “trapping” memories for later use. Might be a post there! Thanks for sharing your thoughts Melissa!
I would want to know so I could make my own plans and not leave that burden to my boys.
That’s the scary part, what will happen to our children if they are left to deal with this burden. Thanks Alexandra!
I guess I would want to know. Most things I would say no too (as far as future telling) but that one, I think I would. Not sure what I could do by knowing, but I’d still want to, I think.
I go one way one day and the other the next day. Thanks for sharing Rosey!
I lost a dear friend much too soon to this terrible disease. Her husband has become very active in organizations that raise money for research. In fact, we’ll be walking in San Francisco next month. He is concerned about his two daughters–the same way you are concerned about your daughter. I saw my friend go through the stages of knowing, and then not knowing, what her condition was. If there was a way to predict, I’d want to know. I understand that not everyone would. My friend began writing down some of her stories, but never got very far. Let’s hope that a cure will be possible some day.
I am so sorry for your loss Risa. It is horrible watching the decline of our loved ones. It sounds like your friends husband is a remarkable man. I would really like to chat with him about his stories sometimes and maybe have him as a guest writer. He has gone alot further into this nightmare than I have. I am also walking in the “Walk to End Alzheimer’s” on Oct. 18th in Greenville, SC and will shortly be hitting everyone up for donations to this worthy cause. If you read this you can email me at rm29303@gmail.com Thanks for sharing here today!
I’m not sure I would want to know. Why spend my remaining years worrying that there is a potential for alzhimers; then die of something completely different, with or without a sound mind.
This is a very good answer! You’re so right! It is something I hadn’t thought about before reading this. People who have commented on this have given me lots to think about! Thanks for sharing!
I would hope that it isn’t hereditary. That is just scary.
All signs say it is hereditary Amber and you’re so right it is very scary! Thanks for your comments Amber!
My dad had this horrible disease. And every time I forget something simple, I thing it’s coming for me, too. But I’m not ready to get tested.
That sounds like me Janie! I freak out a little each time I forget something. It’s a very scary feeling. Thanks for sharing your comments Janie!
I wouldnt want to know. I would want to just enjoy life for everything is is NOW, not what it wont be later.
That’s a terrific outlook Melissa! Thanks for commenting!
We never thought twice about this decision…and my mother-in-law had Alzheimer’s disease. In fact, she was in the late stages when our kids were little.
It is a horrible disease, and you could see how truly scared she was all the time. She had been a nurse, and to see how quickly she deteriorated was awful.
I know that there is a possibility that my husband can inherit this from her– and that my children can as well. However, we cannot live our lives worried about what might never happen.
So true Denise! Thanks so much for your input!
My grandmother struggled with Alzheimers for years. It’s a terrible thing to experience.
So true Jen! It saddens me to watch the way my mother is deteriorating. Thanks so much for your comments!
I think it is good to prepare for “the unknown” although I never thought I would live this long and I’m just appreciating the “extra” time I’m enjoying with my family.
I am in the same boat as you Elayna! I was not expected to live in 2011 so any extra days I get are all a bonus in my book! Thanks for the reminder!
I would really want to know even if it is a scary one.
The comments on this one are back and forth some do, some don’t. Thanks so much for your perspective Chene!
to be honest.. it’s scary to know but I probably want to be prepared so.. the early I know, the better.
That has been a resounding idea. It’s running about half and half right now. Some do and some don’t. Thanks Aisha!
As this is a neuro degenerative issue, I cannot help but think of what part neurotoxins play in this. Aluminum, etc.
Great question Amanda! I would love to know the answer to that myself. Thanks for your comments Amanda!
I think I would want to know, so I could prepare as much as possible – though I know that’s difficult.
Stay tuned to for a future post on how exactly that can be accomplish Kimba! The comments in this post have given me many ideas. THanks for sharing yours!
I could just imagine how scary it would be to have something bad in the family that has the possibility of being passed down to your kid. The more you know, the better. But sometimes, the truth hurts.
It is at times but most of time you are living day to day and you’re so busy that you don’t even think about it. This post was written a couple of weeks ago after a particularly hard few days and I was feeling kind of hopeless I guess. It doesn’t last that’s not my style.
I totally understand your fear. With all the ice bucket challenges going on, it has brought to the forefront the fact that ALS runs in my family—on both my mom and my dad’s side. I live in fear of having it and passing it down to my kids.
That is very scary Marcia and as mothers we want to protect our children from everything and then to have to think we may pass them something like this is devastating.
My father and three siblings have 22q11.2 deletion syndrome, My daughter and myself also have it. Which is why I blog for awareness. Bloging for causes is a great way to get the word out there.
You are so right Amanda that is what started this blog as well. When I first became a caregiver I thought that Alzheimer’s was just losing your memory. Turns out that is the least of the problems associated with it. Thanks so much for commenting and I want to hear more about this disease it is something totally new to me. I will keep your family in my prayers!