Early dementia...

Discussion in 'The Watercooler' started by CAmom, Feb 3, 2010.

  1. CAmom

    CAmom Member

    My husband has been diagnosis'd with an early dementia. In looking back, it's been very slowly progressive over the past few years. He's very functional, although he had to retire from his work two years ago because the technical aspects of his job became too difficult.

    Again, he's very functional in many areas, but not so much in others so that it wouldn't be safe or practical for him to be home alone, i.e., his ability to make sense out of numbers has been affected so that, if he were to need to call 911, he would dial 119 or 191, etc. and MAYBE hit 911 at some point, probably after the house burned down. Even though he still drives, it's very unlikely that he would be able to pass a written test for his Driver's License because, although he can and still does read, his ability to write has also been affected.

    We quickly filed for Social Security Disability for him when it became obvious that he would not longer be able to work, and his application was approved in an amazingly short period of time.

    My question is, I have a few more years to go before I'm eligible for Social Security, yet I'm unable to to work outside my home due to being his primary caregiver...I tried for eight months, if only to get a break from the circus that is my life, and it was a disaster. Does anyone know if there's any sort of Social Security benefit available to the spouse/caregiver of a disabled spouse?
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Im sorry about your husband. Early dementia is a hideous disease. My mom had alzheimers and I was her caregiver. I dont know of any social security for caregivers however you should look into any homebound services that your husband may be eligible for. Call your local area on the aging. I am not sure what they call it where you are. Also there are daycare centers now for adults. I think they call them eldercare most places.

    I wish you luck. This is my biggest fear to be honest. I already have some cognitive issues because of medication and my meningitis. I also have a family history on my moms side of alzheimers with her and my grandmother having it. Im scared to death!
  3. TerryJ2

    TerryJ2 Well-Known Member

    CAmom, you've gotten some good advice.
    I really feel for you. It is so hard being the primary caregiver.
    I would get a PT job or something just to get out of the house. It really, really makes a difference. You cannot afford to hurt yourself further by burning out. What happens if you get sick? Do you have anyone from church or a book club or something who can help out a half a day or something?
  4. CAmom

    CAmom Member

    Thanks...I actually did have a part-time job, but I couldn't keep my focus for worrying about what was happening at home.

    He goes about his own business, now that he's retired...putters around in the yard, etc. and keeps himself busy, so we're not at the senior or respite care stage yet (plus he's only 62).

    But, after a couple of incidents at home, one of which was when he turned on the gas to the fireplace one day and then walked away to turn off the TV before lighting the flame, I knew I had to be here close by to make sure he stays safe.

    We had both thought to work at least part-time for another few years since we both enjoy working, but, since he's now on a fixed income from his SS, and I'm limited to what I can do while being home, I was hoping that maybe there was some sort of Social Security benefit for those of us who're forced into a caregiver role which doesn't allow them to work away from home.
  5. Marguerite

    Marguerite Active Member

    If you were in Australia, I would tell you that yes, there is such a payment. There are several kinds, depending on the situation and family income.

    I would also suggest that if you don't know if there is something or what your eligibility is, you make an appointment with the relevant welfare authorities, because their job is to help you.

    But I don't know if your welfare works like ours does. It should, but does it?

    You could always try to call them and find out. Maybe make an appointment with a welfare social worker (if they have them) and ask for information on what support you could be eligible for, under these circumstances.

    Also find out if there is some sort of support he could have accessed in the workplace, since this forced his early retirement. There might have been a partner's pension allowable. Even though he has since left, this is something that may be possible retrospectively. Maybe talk to his former employer? Or, if he had superannuation at the time, call that super fund and ask them if there was a medical retirement option/disability insurance option.

  6. DammitJanet

    DammitJanet Well-Known Member Staff Member

    CA may have some services that other states dont have but you would have to call the dept of aging. Or call SS and ask for APS and ask them. Call the health dept and ask them.

    I called everyone I could think of to attempt to find someone to help me but found no one because my mom was only on medicare and they wouldnt fund an in home aide to help me. If she had needed true nursing services then they would have sent someone out but at the point we were at, she didnt. When she finally needed nursing services, she was too hard for me to handle myself and I had her put in a nursing home.

    Like you, I needed someone to watch her, help me bathe her, feed her sometimes, and just give me a break from time to time. As it was, it was just me, Tony and my boys who were young adults or mid teens. Can you imagine a 15 year old bathing his 70 something grandmother?
  7. CAmom

    CAmom Member

    Marg, wish we were in Australia! My husband had his own business, so he's totally out of luck for any services related to that...in fact, self-employed individuals here have to pay a yearly tax BECAUSE they're self-employeed.

    As for welfare, I don't think they even consider people who own a home for that.

    I thought that maybe I could tap into my own Social Security benefits early.

    I guess I need to start making some phone calls...
  8. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    are you a member of AARP? They are a great informational resource. I agree though, I would be contacting the SSA or tapping into their website.

  9. smallworld

    smallworld Moderator

    CAmom, if you're having trouble negotiating the SSA office, you can always call the local district office of your US congressman or senator. They have caseworkers whose job is to help constituents negotiate the federal agencies. They will answer questions about what benefits are available to you, and if they don't know, will refer you to appriate officials who do know. I worked on Capitol Hill for 8 years and know this is true. PM me if you don't know who to contact.

    I'm very sorry to hear about your husband. Hugs.
  10. Suz

    Suz (the future) MRS. GERE

    I don't have a shred of advice but wanted to offer my support to you, the caregiver. It's an arduous, heartbreaking, and often thankless job. I'm so sorry.

    Last edited: Feb 3, 2010
  11. CAmom

    CAmom Member

    Oh, Janet, that HAD to be tough!

    Because my husband was found to be disabled for his work, he was given Social Security Disability, and that means that Medicare will kick in for him three years early. I'm grateful for that because, as self-employeed individuals, we've always had to pay for our own health care insurance which runs about $1,000 a month.

    My husband doesn't need any sort of nursing care...at least not yet...he just completely scattered in his thinking sometimes and will lose his focus. If we have any sort of service people coming in to clean carpets, do repairs, etc., God only knows what he'd have them doing if I weren't here to supervise. He used to take care of the cars, yards, and our home, and actually built a family room from the foundation up. Now, it takes him an hour to gather his thoughts enough to grab and paintbrush and can of paint to touch something up. And, OMG! The mess...it's not worth it. He has no sense of money (or numbers in general) at all, and the last time he paid the pizza delivery guy, he gave him a $100 bill for a $10 pizza. The guy thought he'd died and gone to heaven, I'm sure. If I put a pork loin ($15) on a grocery list, he'll come home with a beef loin (fillet) with a $65 price tag.

    He doesn't so much need care, per se, but he absolutely needs supervision.
  12. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    They did have a caregivers program in Ca. as it was cheaper to have a family member take care of relatives instead of sending them to a nursing home, or having nursing services come in a few times a week, but unfortunately, due to us being bankrupt, that was one of the first things Arnie tossed out the window :(

  13. Marguerite

    Marguerite Active Member

    What was the purpose of this payment? Was it a form of insurance taken out by the government? It might be worth a phone call to the tax office to ask them if they have any ideas on what you can do to help your husband, because if you chose to wait until he's totally non compos to dump him on the public health system, or on the streets, it would be a considerable cost to the community. By staying home to care for him, you are saving money for the government. You are also maximising any possible productivity in him, plus keeping his health costs down and making it safe for other people.

    Politicians should never underestimate the monetary value of a caregiver.

    Which reminds me - would calling your congressman's office give you any information? Or possibly begin a process of lobbying for financial support for carers? After all, if a country like Australia has it, why not the US? If it's not in the US now, then why not get someone to lobby on your behalf?

  14. tiredmommy

    tiredmommy Site Moderator

    I'm sorry this is happening to your family.

    Maybe something on this link would help:


    My aunt and uncle cared for my grandmother who developed both Parkinson's & Dementia. They got in the habit of throwing the breaker to the stove after she boiled down a pot of water. Could you somehow shut off the gas valve to the fireplace when you go out? It's not a great solution but it could work until you can line up some help for respite. I watched my grandmother one day a week every week except when she was sent to visit my mother for a few weeks once or twice a year. That kept my aunt and uncle's caregiver fatigue to a manageable level so that grandma wasn't placed in a nursing home until there was no other option.
  15. judi

    judi Active Member

    The Alzheimers Association is a great resource.

    Depending on the area too (I live in IL) there might be respite and/or adult day care available.
  16. Hound dog

    Hound dog Nana's are Beautiful

    You can tap into your own social security at age 62. I know because husband has just applied due to the unemployment rate.

    If it were me, I'd call my local senior citizen's center and ask them if they know of any services that would be available for you. These days there are "daycare" centers for older adults with dementia and Alzheimers so that their caregivers can still hold a job. I don't know what the cost of such services are though. If the senior citizen center doesn't give you leads, call the county health dept. as they should know what services are available in the area. Heck, for that matter you can try contacting a nearby Alzheimer's organization for info. No, he doesn't have that, but what he does have gives him similar needs.

  17. hearts and roses

    hearts and roses Mind Reader

    You've already received plenty of useful information. I would definitely contact any dept of aging in your state as well as AARP and the alzheimer's association. In addition, check with your county social service office - they may know of local, community based organizations that offer services at no additional cost. That's what we have in place for my mother at my sister's house. There is a person who comes in 3x a week and she does light housekeeping and she will also bathe my mom so on those days my sister doesn't have to do it. She will sit and have lunch with my mom. All these small things add up to time you can spend out of the house without worry.

    Hugs~I'm so sorry that you and your H are having to tackle this and put your prior plans to the side. It's heartbreaking.
  18. crazymama30

    crazymama30 Active Member

    I know in Oregon they have, or used to have, family foster homes, where family members were paid to take care of member(s) of their family. Not sure what is called in Ca, but here I would call sensory processing disorder (SPD)--Seniors and peoples with disabilities. If you cannot find them I would call the local food stamp office, many times here they are in the same building or would at least be able to maybe point you in the right direction. A senior center may also be able to tell you, many younger people with disabilities go to the senior center, at least around here.
  19. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    If you google Ca Caregivers, there is a myrad of links for help in Ca.

  20. Star*

    Star* call 911........call 911

    CA Mom,

    I am so sorry to hear of your news. I'm sure this must be so frustrating for your husband and you, as well as your family. Whatever support we can be for you here, just let us know.

    I've done some looking on line to see if there are any helpful resources for you. I'm not sure where in Cali you are - but this should be a start.


    (this was interesting article about Souvenaid) not exactly a miracle shake/berry yogurt drink but promising.

    Family Caregiver Alliance
    National Center on Caregiving

    180 Montgomery Street, Suite 1100
    San Francisco, CA 94104
    (415) 434-3388
    (800) 445-8106
    Web Site: www.caregiver.org



    (alzheimers organization)
    (safety at home sections and lots of helpful information here)

    Register him in the Alzheimers safe return program here - (I'm so sorry CA mom for even having to bring this up)

    FOR HELP WITH daytime care -


    Social Security provides benefits for persons who have worked and earned
    credits towards retirement. Individuals may also be eligible for Social
    Security benefits based on a spouse’s earnings record. If an individual
    applies for spousal benefits when the individual reaches his or her own full
    retirement age, then the individual is eligible for a benefit equal to 50% of
    the worker’s benefit. If the individual applies for spousal benefits earlier
    than his or her own full retirement age, then the individual benefit percentage
    on the worker’s record is permanently reduced.
    It is also possible for both spouses to receive spousal benefits on each other’s
    record. For example, take a couple in which the wife is the lower-earning
    spouse, and the husband is two years older; full retirement age for both is 65.
    The husband’s Social Security benefit will be considerably higher than hers
    if he delays receiving benefits on his own record until he reaches age 70;
    likewise, the wife’s spousal benefits on his record will higher if he delays
    until age 70. The wife can elect to take Social Security benefits on her own
    work record at her full retirement age of 65, when her husband is age 67. At
    the same time, the husband can start taking Social Security benefits based on
    the wife’s work record. He will receive benefits valued at 50% of the wife’s
    benefit. He will delay receipt of benefits on his own work record, receiving
    delayed retirement credits, and will receive a higher benefit when he does
    start receiving benefits on his own work record. In our example, let’s say the
    wife’s benefit on her own record is $800 per month; then the husband would
    receive $400 per month in spousal benefits. In most cases, both husband and
    wife should sign up for Medicare at age 65.
    When the husband reaches age 70, he applies for Social Security based on his
    own work record and receives, for example, $2,000 per month. Because his
    own benefits are higher than his spousal benefit, he will receive his own
    higher benefit, and he will no longer receive the spousal benefit. The wife
    can then apply for additional benefits based on the husband’s work record.

    Hugs -