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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
Hi I am new to this my husband aged 69 has Posterior Cortical Atrophy which is a type of Alzheimer's which doesn't necessarily affect the memory but more the vision and awareness. He is now in a nursing home as he needs 24 hour care, he can't see, he has hallucinations, can walk but not well. And is doubly incontinent it was not safe to keep him at home so after he fell last May and broke his wrist he is now in a very good nursing home. Every time I visit he says he wants out and he is fine he can do everything.
Hi Cathie, Welcome to this sit. I am so sorry that this has happened to you. Your husband is fairly young to be so advanced. We understand the devastation dementia can cause and sympathize. Please feel free to post on any existing threads or start a new thread. We are here.
Welcome Cathie, I hope you feel very free to post the issues and feelings you are dealing with. I have and have found the people on this site very supportive and helpful. There is a wealth of information to be discovered in the blogs and in the new and old messages. So sorry you have to be dealing with this. It takes a toll on you, body and spirit. My partner is turning 65 in a few months. We felt so young until this disease began devastating us about six years ago. My prayers and thoughts are with you.
MY stress is getting debilitating. My wife is gone mentally but she is still alive physically.. I get nervous when I visit her. I was never nervous before she got sick. Now I am nervous all the time. my therapist helps and so does medication, but I still feel alone and helpless. i can't lie down and relax, because my mind is flooded with negative thoughts. I know she will die but I don't know when. I don't want her to. It's selfish, I don't know how I will react when she is not here at all. I can't even lie down and take a nap without getting a panic attack. I am scared. My kids are a great help-but sometimes they think I worry too much about something I can't change. How can I get through this? I need help.
Hi thomp, I'm so sorry you are having such a hard time. Why don't you tell us a little about your situation. For example, how old are you and your wife, how long have you been married, how long has your wife had Alzheimer's, how long has she been in long term care, how did you spend your days before she became sick, what do you miss most about her, how do you spend your days now? People on this site have many different experiences and I'm sure there will be someone who identifies with you.
I'm sorry you're going through this bad patch. It does happen, and it will pass. You just have to hang in there until it does. I found going for long walks, no matter what the weather, helped me the most. An exercise workout helps, too, either at home or your local gym. Do you have Y in your neighborhood? They have racquet ball and other programs, and it's good to be with other people. Some find that to write down their thoughts diffuses their anguish. We're here with you.
thomp360 - I'm sorry to hear you're so stressed - hopefully by telling you what has helped me, it can also help you. I'm also stressed & it often gets the better of me - my mind is often too active also. What has worked often for me is watching TV - that is my "go to" distraction & one that I allow myself to do anytime I need it & for as long as I need it. I need my distraction to go the distance. While watching a movie or program my mind is focusing on what is on TV. At the beginning it was only working for a few minutes at a time, but as time went by I was able to get totally absorbed in what I was watching & for a short time able to forget & get away from my difficult situation. I often watch TV in the evening & fall asleep while watching - this helps to "turn off" my active brain. It's easier to fall asleep while the mind is not focusing on my problems. What is also helpful is guided meditation online. While lying down comfortably you focus on what is being said - while the mind is busy listening it's less likely to get out of control with all those crazy thoughts. It does take a few times before you can relax & let yourself go.
Perhaps reading would help you - it could get your mind off your problems. Also, going out with friends gets you out of the house & helps take your mind off stuff, even if it's only for a little while.
Have you talked to your therapist to find out why you are nervous when you visit her? Perhaps he or she could help with that. If you could get rid of the nervousness, it would allow you to enjoy the visits. My husband is also in LTC & I enjoy the visits, because I know he's well taken care of & I want to make the most of my visits. I don't know how long it will last. Living one day at a time is the only way to do it. You cannot worry how you're going to feel in the future, you must deal with how you feel at the moment. I've managed to tell myself that my husband has his "own life" in his facility & I have mine separate from his. That was VERY difficult for me to accept & it took a while, but once I did a weight was lifted from my shoulders - this only happened about 3 months ago.
My kids also tell me I worry too much about something I can't change. So, I've finally managed to accept that fact & realize that I truly cannot change what's happening to my husband, and the only thing I can change is the way I react to my situation. Once I realized the disease had taken a "good hold" on my husband, I had no choice but to "let go" of him. I was VERY mad that the disease "had won", but once I did that, it freed me & help me find a bit of peace. I still struggle with stress & active thoughts, but they are more manageable now.
I hope this has helped you a bit. But all this takes time..... Nothing happens overnight, but it will happen.
Nicky, you said it all real well. Thomp, welcome and please give sugestions a try. As a man on this forum I found that experiences with disease as no gender preferences, only slight differences in the story. Keep reading and stay with us and those that have gone before us.
there is a thread for those have lost their spouse. Plus, you are welcome to participate in any current threads. Those that have gone before can be a great help for those of us still in the trenches.
thomp360, I'm so sorry for your loss. Perhaps someone here who has experienced the loss of their spouse can give you advice. Charlotte is right, it's better to move this to "For AD Widows and Widowers".
Dear thomp360, I am so sorry about the loss of your wife. I remember that you were having a very difficult time with her illness, so this must have been a terrible blow to you. How long ago did your wife die? Have you been getting any help from family or any counseling? Rest assured, there are many of us here who have been through this and we understand how devastating it can be.
Please post again when you feel able to. Like Nicky and Charlotte, I suggest you post your next comment on the "Widows and Widowers" thread, so we will be able to find you.
HI Thomp360, I feel like I am a widower in training and I don'like it. Us GUYS OUT HERE need you. Hang in there for youself and all of us. Look for that purpose. It may be help to guys like me. Think about it. Here, you are not alone. Man hugs,from New Mexico.