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So scared
Owen186ever
Posted: Wednesday, September 12, 2018 9:25 PM
Joined: 9/12/2018
Posts: 1


hi.  New here.    My husband was just diagnosed at 56 and I am only 46 with an 8 year old son. I am so scared for our future.  What do I tell my son? Do I tell him?
MissHer
Posted: Wednesday, September 12, 2018 9:29 PM
Joined: 11/13/2014
Posts: 2357


Oh I am so sorry. I have no idea but I'm sure that someone can advise you. If you go to the Spouse Partner Caregiver support here you sure will get more answers. Deb
ruthmendez
Posted: Wednesday, September 12, 2018 9:41 PM
Joined: 9/8/2017
Posts: 2317


Hi Owen186ever.  Yes, as Missher said, go to this link  for spouses forum

https://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438

or caregivers forum and reenter  your topic

https://www.alzconnected.org/discussion.aspx?g=topics&f=151

Surely you will get answers and advice through there.  I am so sorry that this is happening to your family.  Also, don't hesitate to join a local support group and don't isolate yourself.  Your son might be to young to fully understand what is going on, but I hope someone here who is going through what you are going through can guide you with helping your son.  There are others here who have young children too.

Hang in there and hope to see you in the other forums soon.


Jim Broede
Posted: Thursday, September 13, 2018 12:59 AM
Joined: 12/22/2011
Posts: 5462


Owen186ever wrote:
hi.  New here.    My husband was just diagnosed at 56 and I am only 46 with an 8 year old son. I am so scared for our future.  What do I tell my son? Do I tell him?

 

 

Don’t be scared. Accept the challenge. It ain’t the end of the world. At 46, you might not even have lived half your life yet. Take it a day at a time. I’m assuming you have good health. And lots of things going for you. Not least, your son. Try to guide and console your husband. Through all this. It’ll be a real learning experience for you.  You may come out of this in better shape than when you went in. I did. Why not you? I’d rather be the younger care-giver than the older one with dementia. Don’t you feel the same way? I spent 13 years as my wife’s care-giver. She was nine years older than I. Anyway, I came out of it a better human being than when I went in. No regrets. That’s the nature of love.  True lovers really care. For each other. After  Jeanne died, I got on with life. I’m in love again. Good thing. I never had time to be scared. Too busy savoring life and love. Hope the same goes for you.  Stick around. In Musings.  You may learn more here. Than in the other forums. Put it to a test. Don’t under rate Musings. We’re a little bit different here. --Jim

P.S. Tell your son everything.  In words that he understands. Use his limited vocabulary. In the best way that you can. Keep explaining and explaining. He'll learn. By watching you. Observing. Tell him not to be scared. Set the example. You'll all get through this. And be better for it. I have confidence in you. Now have confidence in yourself.


jfkoc
Posted: Thursday, September 13, 2018 10:15 AM
Joined: 12/4/2011
Posts: 19116


Hi Owen....

Your fear is understood. 

Education is going to be your best friend. I would start with going to alz.com (you can connect next to the sign in spot). Pay particular attention to the first section re diagnosis and legal matters.

I would not say anything to your child for now...wait until you yourself get a better grasp on this illness. Your son is going to pick up your emotions.

We are going to be here for you with information and support.

Do re-post on Spouse forum to get max help.

 


Jo C.
Posted: Friday, September 14, 2018 8:16 AM
Joined: 12/9/2011
Posts: 11377


Dear Owen186ever, though I am sorry for the reason that brought you here, I extend a very warm welcome to you.  I am so glad you have found this wonderfully supportive Message Board.

I can well understand the fear and stress that you are facing having heard this diagnosis. That can be quite a shock for most of us; it must feel as though the very earth is shifting under your feet. 

While you are on the Alzheimer's Assn. Message Board; it takes a little while for most of us to find where the best spot is for information and support when facing such difficult situations.. While we are welcome to Post on any Forum we wish, this particular Forum is not the best place to get the initial and ongoing information that will be of best help where the "rubber hits the road," so to speak.

As recommended above by other Members, both the Spousal Forum and the Caregiver's Forum have the best support and practical information for what you are now beginning to deal with.  There are also a lot of individuals with a Young Onset spouse and some who have small children on the Spousal Forum.

NOTE:  There is the Alzheimer's Assn. Helpline that can be reached at (800) 272-3900; there are no fees for their service.  If you call, PLEASE ask to be transferred to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are extremely supportive, have much information, and can also help with problem solving.  They also can assist with the best way to approach this when a small child is a concern.

The two most important things in the beginning in addition to educating oneself by reading and reading and then reading some more, is to have a Dementia Specialist as part of your Care Team, and to also see an Elder Law Attorney so you can position yourself as best as can be for what the future may bring; both of those are really important.

Also, when a spouse is no longer able to work, there is a "Fast Track," for Disability income application for Young Onset Dementia; that is, dementia that has onset prior to age 65.  You will find spouses on the Spousal Forum who have applied for and received this very quickly.

As you read other people's Posts, it is important to know that not everyone faces identical dynamics.   Each person's journey will be different and some never develop some of the more difficult symptoms that others do.  That is important to remember.

Right now, it is good that you are reaching out and looking for support, there is much experiential wisdom to be gained on the other Forums mentioned above.

Please know that the Members here will understand how serious this is for you and the grief and fear you are feeling. 

We will look for you on the other Forums or if you decide to stay on this one; we will be thinking of you and we truly do care.

J.


Dahlke
Posted: Friday, September 14, 2018 10:31 AM
Joined: 7/6/2014
Posts: 1351


It'a ALOT to take in at first, and it will take you awhile to process the information about the disease. It's a learning experience. For everyone involved. 

About telling your Child. Children are beyond perceptive about what is going on around them. When he starts to notice changes  I would start out by just saying, "Dad is having some memory problems" and let it go at that, until he starts asking questions. 

Dahlke (Cynthia)


Jim Broede
Posted: Friday, September 14, 2018 12:55 PM
Joined: 12/22/2011
Posts: 5462


 

Life isn’t always as one wishes it to be. But that doesn’t necessarily have to be a problem. No reason to panic. Or run scared. I recommend cooling it. Taking your time. To analyze and understand your situation. Could be that your loving spouse has been diagnosed. With Alzheimer’s.  You know, that happens. Often enough. Well, I say, learn to cope.  Deal with the problem. In an effective manner. That suits you. Some care-givers choose to be scared. For the rest of their lives. I’d rather take charge. And stop feeling sorry for myself. Being a care-giver. For 13 years. For my dear sweet wife.  Was one of the best and most gratifying experiences of my life. --Jim

 


Jim Broede
Posted: Saturday, September 15, 2018 6:57 AM
Joined: 12/22/2011
Posts: 5462


Care-givers are supposed to find ways to be happy. --Jim
eaglemom
Posted: Saturday, September 15, 2018 1:40 PM
Joined: 3/7/2012
Posts: 2596


Welcome to the message boards Owen186ever. I'm certainly glad that you've found us. As others have said your postings would probably be seen potentially by more people if you posted in the Spousal or Caregivers Forums. There is absolutely nothing wrong with posting here - its that the Musing Forum might not be the correct one to give you the support, encouragement you will need.

As for such an early diagnosis, I'm certain that your head is spinning. Ask questions - that is how we can help one another. Right now don't rush to do anything other than accept what is happening to your family. Is your DH seeing a neurologist? Have any medications been prescribed? Have you even had time to think about disablilty? Many of us can help you through that process. Spoken with an attorney? Those things - disability and attorney are where you should focus right now. Once those two things are completed you can breath a huge sign of relief.

I would highly encourage you to contact your local ALZ Chapter. Hopefully they have some support groups the both of you can attend. If at any point your just needing immediate help please call the help line - 800-272-3900 and ask for a care consultant. They will be able to point you in the right direction.

Take a deep breath, your world as you know it has crashed around you. We are here to help you through the journey. As for telling your son, or course that is totally up to you. If he's wondering why dad's home or such just give him enough to not worry him for inform him. Something like 'dad's just having trouble concentrating right now.' Then relate it to when you son has homework and has to concentrate to do it correctly.

Again welcome. If you will look at the top of the page you will find a section called solutions. You might look through there for some answers also.

eagle


Mimi S.
Posted: Saturday, September 15, 2018 3:32 PM
Joined: 11/29/2011
Posts: 7029


Welcome to our world Owen 186. We're so glad you found us.

You have received some excellent advice, so I won't repeat.

Maria Shriver has written an excellent book for kids: What's Happening to Grandpa.  Read first and then share with your son, discussing as you go.  Above all, be honest with him.

I do hope you can find a local support group for both of you. if at all possible, have hubby join us folks with AD on the Younger  Onset Group.  As you will find out, those diagnosed at a younger age are less common and it ay be difficult to find others locally in your situation.  

Yes, it's scarry. Take a deep breath.  It may also help in a month or so, to talk with a social worker. Contact your local Alz. Officer. You need to speak with someone who is famiiar with Early Onset Dementia.
just exhibit Love
Posted: Saturday, September 15, 2018 4:45 PM
Joined: 12/6/2011
Posts: 681


Owen186ever

I feel children should never be a part of grown up issues..and being only 8 years old. May you choose to let him just love his dad and not worry about what or when to tell him anything..let him discover in his own world and give  simple..answers he can understand at his age if he asks.

Your son will be able to help his dad and there are many Life Lessons he will Learn in his fathers journey.. about unconditional Love that Life will teach him.

Yes I understand you are scared..but know this the strength you need will come when it is needed to get you through your husbands journey..the proper mindset is so important..as your husband needs your positive attitude for his well being..

If I could give you one thing to remember it would be to stay calm and exhibit patience no matter what the circumstances are..and this you can give..

I so hope you have a good support system with family that can help you when needed as we all need family and friends to share when we need to talk or share our feelings..

When my husbands mother came to live in our home..I chose peace and Loved that old woman and I have no regrets as I took one day at a time and found ways to accomplish a routine and exercise for Margie which helped her well being and helped her sleep well at night also..keeping her busy..during the day..she would help me do many chores and we just Lived Life my friend..and did not focus on alzheimers and the memory loss..as we were the keeper of her memories and her dignity...and this we could give.

what I am trying to say to you is..do the best you can with the cards you have been delt sort of speak..and the attitude you choose is everything...so many people have so much to accept in Life..and we cannot always know what tomorrow will bring none of us are promised tomorrow..it is today that is important...but the happiness of your child and your husband will depend a lot on you..choose peace and Love and do your best and ask for help when you need it..know your own limits and never under estimate the power of touch..

 when Margie would become upset..I would smile and touch her hand and allow her to express her feelings because she was the one that was really scared..I could see it in her eyes..losing her memories was so hard for her she called me honey when she could no longer remember my  name..the tears would come to my eyes many times for her..and in a lucid moment she told me she did not want to be a burden to me..I told her...no she was not.

Margie taught me many important Life Lessons I never would have Learned if I have not been there for her with her in her journey..I no Longer take one day for granted..and I cherish those I Love..and realize family is everything.

Please forgive me for this post... being so long but I wanted to share my thoughts and feeling with you..

Namate

Love Rosie