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Younger Early Onset Alzheimer's Caregivers

Younger Early Onset Alzheimer's Caregivers

My husband was diagnosed with Alzheimer's in March 2016 at age 51. My heart is still breaking. I am 43, I work full-time and we have three children (18, 20, 22). I am scared to death of what the future holds :(

A myALZteam Member said:

Hi there
My husband was diagnosed just prior to his 60th birthday and now just past 62 and Dr's are pushing me to put him in long term care. His decline has been very rapid and he has alzheimers as well as FTD he struggles to wash dress and use the toilet and frequently wets himself I run the gamet between anger and fear. Both of his parents had dementia but nothing like this Jan 2015 he was still working running heavy equipment and got sent home because if a safety issue then he was diagnosed in June 2015.
Make sure you get power of attorney and wills done as soon as possible and if you have disability insurance on any loans or mortgages ir credit cards get those claims activated delays can cause denial of claims . Also for your kids if they can join a support group it would help them understand this terrible disease. It's hard but try not to forget how to laugh my husband hugged and kissed his doctor the other day and called her sweet he still flirts with other women but calks me the bitch I try not to take it personally
If you have a social worker get that person to advise you on things to do it can be very overwhelming. In some areas if you need government support for care it's necessary to file for legal separation and that adds another indignity to this whole situation.

Good luck smile at the little things they get lost in this journey

posted about 4 years ago
A myALZteam Member said:

For us life has taken another detour in that my husband has just been admitted to long term care. I can't believe he was diagnosed less than 2 years ago and now is considered Severe and after 42 years we are apart. I was physically and mentally exhausted and struggling to handle his care. He moved in 4 days ago and seems very calm and doesn't seem to care if family is there or not. He is sleeping more and less aware of his surroundings I'm struggling to adjust to being able to sleep still waking every 3 to 4 hours and listening for him I belong to 2 support groups and they tell me it will take months to adjust to my new normal his adjustment will be much easier this is so hard the never ending grief and anger that he's gone and just existing he doesn't deserve to be locked in this void little or no enjoyment he rarely smiles or laughs hang on tight to those around you who support you and continue to be present the circle of friends that stick around becomes very small and as caregivers our world shrinks and then when we are alone it's very lonely

God bless everyone on this journey the tests never end

posted over 3 years ago
A myALZteam Member said:

Educate, educate and educate. Keep the brain active -- start learning a new language. Get a progressive doctor.

posted over 4 years ago
A myALZteam Member said:

I have been dealing with it now for ten years. No support groups for early onset. My husband is now quieter and sleeps about 14 hours a day. Every one says wait until he gets mean, wait until he doesn't sleep. Well I got the opposite. He is still mobile. I have to line up his clothes( because he wanted to put underwear on last). I have toothpaste on his toothbrush, over his hairbrush because he always brushes his hair. I fix his plate, have to watch that he uses the right utensils. I don't ask him to do much because he can't remember where things are and forgets what you asked a second later. Sometimes, it is hard to carry on a conversation. With all this, I enjoy his company, he still enjoys the animals, laughs at things(sometimes). He does not like outside. He worked outside as a builder. I still love him.

It has been months since, I have written. He is now awake 3 to 5 hours a day total. I shave him. I had to take the washcloth away. He would use the soap or the washcloth. Not both. The soap kept falling. I found a thin mesh bag to put the soap in and it works. Eating, everything has to be cut. One utensil. Two is confusing. Anal leakage. I was doing sheets several times a week. Would not wear underwear to bed. I gave him a choice of underwear or pad on bed. He chose underwear. I hand it to him every night. Doesn’t know where his bed is and sometimes how to get in it. I do his nails. Pretty mush everything but bathing. I have etched glass and sliding split doors on the shower I am going to have to replace it to see him. Hard to take him in public.

edited, originally posted about 3 years ago
A myALZteam Member said:

dam, so sorry ,hope you have a great support group of friends, cause family ,in my case are useless
,you & Kids need much support, keep your Husband social xoxoxox

posted over 3 years ago
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