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Will we ever smile again?
1stressedlady
Posted: Sunday, April 14, 2019 5:25 PM
Joined: 4/6/2019
Posts: 30


It's my son's 9th birthday today. He asked me point blank what's wrong with daddy? He said he's frustrated because dad doesn't remember anything he says and he's no fun anymore. He says he misses his "real" dad. 

I can't stop crying. I held up well with my son and answered all his questions,  and he actually thanked me for my honesty and calmly returned outside to play. But now the tears won't stop. My husband has not been diagnosed yet, but his dad had this disease and it seems he does too. Testing is still under way. 

I just wonder... for you wives of men in their 40s at the height of your career with small children.... how the hell do you make it through? Do you ever laugh again? Will you ever find love again? Will your kids make it through this never ending ungodly storm? Will I ever feel relaxed again? I'm so stressed and alone I feel like my skin is going to actually pop open. 


Gig Harbor
Posted: Sunday, April 14, 2019 7:40 PM
Joined: 3/10/2016
Posts: 643


I am not in your position. My husband is much older. I honestly am not sure what you do to survive this period. Just remember that nothing lasts forever. You sound like you handled your son's concerns perfectly. You will be his rock and his support and he will always remember that. I have been honest with my husband about his dementia. I said that everybody has something. We have 2 friends with terminal cancer and another one who lost her 43 year old daughter. I told him that he is free of cancer, diabetes or heart disease. He is able to get out and walk although he wishes he could still drive. I explained that life does not seem to be fair sometimes but we need to be strong and work thru this. That seemed to make him feel better. Having all of that happen in your 40's does seem very unfair. Try to take care of yourself and carve out time with your son away from your husband. He will need you to be strong and healthy thruout this time and alone time with you will give him time to vent. You might talk to his teacher and school counsellor so that they will be prepared to step in and help when he needs extra support. Stay strong. Praying for you. You might post on the spouse site for added support.
Mimi S.
Posted: Sunday, April 14, 2019 7:46 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world, 1stressed lady. I am so glad you found our site. 

Why has your husband not had a complete diagnosis?  There are other donditions that exhibit dementia like symptoms, some of which are easily corrected  Usually a large medical Center or University with a dementia department is the best place to go. From your library ask for a copy of any book by Doraiswamy and Gwyther. The first part of the book describes the process.

Maria Shriver wrote a book called: What's Happening to Grandpa (or something like that.) It can be adapted to be shared with your son by explaining that most people get the disease when they are much older. And, as you did, when he asked, take time to let his talk and answer his questions as honestly as possible.

Do get to know the folks in your local chapter. You might also benefit from speaking with a counsellor who is knowledgeable about Younger Onset Dementia.


Gig Harbor
Posted: Sunday, April 14, 2019 9:36 PM
Joined: 3/10/2016
Posts: 643


Another thing - try to meet others in your immediate area that you can talk to. I made my hometown my log-in name. I had 3 ladies contact me and we have become great friends. We have added others to our group and some have left due to death or moves. We all say that this is the best thing that ever could have happened, having this group. We can say anything with no judgement. To outsiders we probably would sound horrible but we are just doing the best we can with this curveball life has thrown at us. If you can reach out you will be surprised at the support you can find in your town. Just having someone to call or text at night when sadness sets in is huge! Friends who are not going thru this are sympathetic but really have no idea. Much the same as I really don't understand what it would be like to have a severely disabled child. I can be sympathetic but still don't know what it is like for the mother of the child.
TayB4
Posted: Monday, April 15, 2019 6:49 AM
Joined: 8/8/2014
Posts: 885


Hello, we are in a similar position as you. My husband was 46 when he was diagnosed with Mild Cognitive Impairment and 48 when diagnosed with Early Onset Alzheimer’s. The years before diagnosis when he was exhibiting symptoms were the years  our daughters were in middle school and high school. 

I am not going to sugar coat this: this disease is horrible and there were many days I wanted to get in my car, drive away, and never return. There were times when I hated him as well as the disease. I just placed my 52 year old husband in a long term skilled nursing facility last week because he is exit seeking and gets lost  I could not even take a shower if my daughter was not home because he would leave.

These are the things I did to survive: educate myself as much as possible on the disease and any services available in my area. Husband went to adult day health for the last 18 months, paid for by Medicaid, so that I could continue to work. I refuse to give up my income and career. I will never get it back and the disease has already bankrupted us - literally. Get out with family and friends when you can. You need the support. As much as possible, try to live in the moment. I find that when I do that, I have much less stress. I am not worrying about what is to come; I am just enjoying any small moments of joy. 


Vik
Posted: Tuesday, April 16, 2019 9:13 AM
Joined: 2/26/2019
Posts: 172


Dear Stressed Lady, all of the suggestions in response to u are all true! U found a great group of people who are lovi g and encoyraging, and have first hand experience!  

I was diagnosed with Early Onset Dementia and went into a deep depression. Perhaps ur husbamd is also experiencing depression. My neurologist suggested i get on anti-depressants and get counselling. Both of those helped and i am still doing those both.

Im sure your husbamd is going thru a WIDE RANGE of thougjts and emotioms! He may not express them which is not good either.  He needs to get involved with a suport group where he can express those fears WITHOUT JUDGEMENT! The people in this group hav given me SO MANY GOOD ideas and LOTS of encouragement! He can contact me if he has anything he would like to discuss!


Lisita
Posted: Wednesday, April 17, 2019 10:31 PM
Joined: 4/3/2018
Posts: 64


it makes so mad that in 100 years they still have idea how to treat alz diseases! we need a speaker we need a cure we need God to help us . we can try to find help ourselves as my family my husband is o cheap he will not consider stem cell  so i keep working on him the fda is not hyping tp approve stem cell as it's not a money making pill . so young to have this happen how so young i can't understand it  . a young brain is better than an old brain  ! so don't loose hope because the americans put put all there money into curing cancer   . the only thing they cured is polio, the measles is you get mmr shot  , chicken pox varacellous shot ,  still get the flue they treat the symptoms not the root of the root of the problem get get a holistic dr to to check it out . the metals in your system ,hormones , you diet, exercize ! good luck i'm praying for you smile at that  

lisita


Mae88
Posted: Tuesday, April 23, 2019 8:58 PM
Joined: 9/30/2016
Posts: 73


My DH began to show signs around age 50.  He was dx with vascular dementia age 55 then Alz addition age 57.  He just turned 58 Saturday.  
We have a 17 year old daughter still at home.  She frequently tells me she cant wait to go to college.  I dont blame her.  DH rwcently had driving taken away and since he has become a very angry bitter depressed isolated man.  He does not see he has anything wrong.  Shocking.  There is a name for that....

These diseases are awful.  God awful.  I simply have nothing good to say but accept help early on.  Build a network of helpers.  I now have paid lawn people.  House keepers.  Its just exhausting.  Join support groups.  Learn from those who walk before us.  


Mimi S.
Posted: Wednesday, April 24, 2019 12:01 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world, mae. I'm so glad you found our site.

Do tell us more about the process of your husband's testing.

He has anosognosia.  Anosognosia is a characteristic of the dementias that keeps the patient from being aware that he has dementia.

Maria Shriver wrote a book: what's happening to Grandpa, or something like that. Please read it first, then share with your son.  And I'm so glad you were able to talk.

From your library, Ask for a cop of any book by Naomi Feil, with the word Validation in the title. It's not an easy read but what you find 0n-line is not sufficient to implement her program.  Also help your son use it. The results are well worth the time spent learning it.

Is there an Adult Day Care program hubby could attend a few days a week?

 

Do come here to vent. We are always here.You might try a local support goup. Our help line: 1-800-272-3900 can give you some options or give you the contact information for your local chapter. Don't be surprised if the other caregivers are older. However, many of your concerns are similar.

 

I'd also suggest couselling for you and your so. It's important to get a counsdellor who understands dementia.