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    • CommentAuthorAdmin
    • CommentTimeApr 4th 2014 edited
     
    To all posters who are not spouses of Alzheimer patients,

    I have sent personal e-mails to all of you.

    Dealing with any family members with Alzheimer's Disease is a tremendous emotional burden that requires support and information. However, the emotional tissues faced by SPOUSES of Alzheimer patients are, as the motto of this website states, "unique", unlike the issues that adult children, grandchildren, or other relatives and friends of Alzheimer patients face. This site is a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.

    Until I started this website in 2007, spousal issues were not discussed anywhere on the Internet or in the media. I wanted a place where spouses could feel comfortable discussing their "unique" issues. It is extremely important to me and all of our members that these message boards are kept exclusively for spouses. The resources on the left side of the home page - www.thealzheimerspouse.com - are available for any Alzheimer caregiver.

    I am personally requesting that if you are NOT a spouse that you look into the Alzheimer Association website - www.alz.org- for forums that are more appropriate for adult children of Alzheimer patients or join the Facebook group - Memory People, and allow me to keep this forum for spouses only.

    Thank you for your cooperation.

    joang (owner and administrator of The Alzheimer Spouse LLC
    • CommentAuthorring
    • CommentTimeApr 4th 2014
     
    Thank you Joan.
    • CommentAuthorWolf
    • CommentTimeApr 4th 2014
     
    I lost my father through vascular dementia. I am losing my spouse through alzheimer's disease.

    They are very different and I'm glad to have this place where everyone has and is going through the same losing of our life partner that I am.
  1.  
    I lost my mother through vascular dementia and I am pretty sure that my mother-in-law had Alzheimer's. There is no comparison between dealing with other family members and your spouse. I have trouble controlling my temper when some idiot says to me," I know exactly what you are going through. Aunt Mathilda had Alzheimer's." I have even corrected professional people who will say much the same thing.
    • CommentAuthorLFL
    • CommentTimeApr 4th 2014
     
    Thanks Joan.
  2.  
    Thank you Joan. I fully agree and applaud you bringing this forward and wanting to maintain your original focus.

    As a daughter whose mother has dementia I need support however get it in other formats.

    Here is where I come to learn about and receive tremendous support on how to cope with the loss of my husband slowly eroding before my eyes. It is SO true, our issues are completely unique and only understood by other spouses/partners.
    •  
      CommentAuthormary75*
    • CommentTimeApr 4th 2014
     
    Thank you, Joan.
    I believe I've turned into a tired, cranky old lady.
    Many good people take time, energy and thought to respond to other spouses, and when it's someone who can't, or won't, make a contribution back to others, I react like the cow who is milked too hard: it sets up a positive resentment.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 4th 2014
     
    joan - can you or one of your helpers close those threads started by non-spouses?
  3.  
    I understand everyone's dismay at this horrible disease. Also lost my Father to Alz and now am losing my DH. The pain and the frustration and the need to find kindred hearts is the same. I hope that the people who are being shut out find some sort of group or blog to join. Maybe they could start a blog for family members that are care givers but not spouses. at any rate my heart goes out to all of you no matter what your family connection. Arms around.
    • CommentAuthorAdmin
    • CommentTimeApr 4th 2014
     
    SHELLSEEKER50,

    When I send personal e-mails to non-spouses explaining the history and reason for this website, I always give them a list of resources that are appropriate for children/grandchildren/other relative caregivers of someone with Alzheimer's Disease. The Internet is filled with such groups, and I make sure that they are steered toward them.

    joang
    • CommentAuthorabby* 6/12
    • CommentTimeApr 4th 2014 edited
     
    You're helping others with referrals but keeping our community ours.

    Thank you.
    • CommentAuthordeb42657
    • CommentTimeApr 4th 2014
     
    Thank you so much Joan!
  4.  
    Joan, I thank you for this site and I really do want it for those of us who have spouses - I took care of my grandmother with dementia and I sailed along compared to how I'm suffering now because of DH. This site has been "saving" me for several years and I need it. Even though I don't post that often, I read very often because it helps me feel "normal" and I get re-inspired.

    Thank you thank you
  5.  
    ttt for kasha
    • CommentAuthorpaj
    • CommentTimeSep 15th 2014
     
    Thanks Charlotte for calling attention to the fact that this site was for caregivers of spouses. Sorry this has not turned out as planned. Such a site is what I've been looking for and hoping to find. Joan is correct. The experiences of those with spouses diagnosed with Alzheimer's are much different than those of other caregivers.
    • CommentAuthorChristine
    • CommentTimeSep 17th 2014
     
    I'm so glad I found this blog. My 62 yr old husband has TBI induced Alzheimer's. I've been caring for him by myself at home since 2007.
    I'm also his General Guardian, which adds another layer of difficulty because I have to get Court approval for major decisions.
    Lately I'm dealing with the difficulties of navigating the Medicaid system, their cuts, changes, and trying to find a Memory wing to place him. Facilities around here (North Carolina) are reducing their Medicaid beds.
    Just learned that i need to petition the Court to get approval to change our home's title into my name.
    Recently learned that in my State of NC memory wings are in assisted living facilities. Recently NC split LTC into 2 parts, skilled nursing and assisted living. SN gives spousal protections. Assisted living (with memory wings) does not have spousal impoverishment programs. My friends and relatives say why don't you just put him into a "nursing home" - as if that is as easy as it sounds.
    They have no idea of the difficulties.
    • CommentAuthorCasey
    • CommentTimeSep 18th 2014
     
    This is my first time responding. My Dad died of Dementia and I have been married for 4 and 1/2 years and found out definitely that my husband has Dementia and he is only 57 years. It is extremely frustrating when your parents are gone, only child, best friend husband just died and around 80, another close friend 79 has Alzhemer's if try and talk about feelings immediately, she talks about not knowing what it is like to have lost your husband. Unfortunately, never really did develop friends my own age. Can't communicate feelings to my husband which is very frustrating and upsetting. I exercise my brain by using luminosity but have to use my computer real early in the morning or my husband gets mad or disturbs me and I need to concentrate when working on these games. Together too much of the time. I get frustrated, angry slam does and yell plus cry. These are my feelings and thoughts.
    • CommentAuthorWolf
    • CommentTimeSep 18th 2014
     
    Hi Casey. It's a tough road we're all on too. Join in the conversations below below. Welcome to the board.
    • CommentAuthorsuzyQ
    • CommentTimeNov 13th 2014
     
    I think this may be the kind of forum I've been needing, looking for. However, since there are so few postings and none recent I don't know if it is still active. I am a 78 year old woman caring for my 84 year old husband, diagnosed with Lewy body dementia, which has symptoms of both Alzheimer's and Parkinson's. We have been married for 55 years. Is anyone in a somewhat similar situation?
    • CommentAuthorWolf
    • CommentTimeNov 13th 2014
     
    Suzy,

    This particular topic isn't used much but if you look down below the "sticky" threads (which all begin with the word sticky) you will see the topics that are active where some people are posting every day. Please feel free to join in.

    There are people here with Lewy body experience and everyone here has and is going through the spouse issues.

    Welcome.
    • CommentAuthormyrtle
    • CommentTimeNov 13th 2014 edited
     
    Hi suzyQ,

    When I found this site six months ago, I was looking for specific advice and was completely confused by all the different discussion topics. There seem to be hundreds of them. The ones that are not "stickys" seem to be active for awhile and then they lie dormant until someone revives them. I found three discussion topics (or "threads") with the words "Lewy Body" in them. I'm bringing one of those threads to the top for you. It will appear right under the last sticky. You can post your message there and one of our members whose spouse has Lewy Body dementia will probably notice it.

    As far as whether this website is the right forum for you, I think you will find that the members are very knowledgeable, supportive, and kind. They have helped me enormously.
    • CommentAuthorsuzyQ
    • CommentTimeNov 14th 2014
     
    Thank you, Wolf & myrtle. I'm reading my way through some of the threads right now.
    • CommentAuthorbrindle
    • CommentTimeMar 16th 2016
     
    Thank you for putting this forward. Dealing with spouses is totally unique. I appreciate the fact that we have a place to share of our own with others who truly can help, support and understand.