Welcome to Cally and smborass! They wrote under "age and fatigue factor for caregivers".
Welcome to my website, which I started in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now 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.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
If it appplies to you and your spouse - there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Thank you Joan..... You have an interesting site.....how true, only those that have walked the journey of "spousal support"....truly know the journey......I have read some of your Blogs......excellent......thanks again.....Cally
Welcome to Donh from South Dakota, glad you found us and sorry you have to be here. Others will be along to give you a warm welcome. If you would like to share your situation you can start a new discussion and introduce yourself. My husband was diagnosed 2+ yrs. ago , he is almost 74, I am 59. I am in Georgia.
glad to hear from anyone I have been trying to kept me head strait. My wife has had alz. for about 5yrs she lost the use of her legs and fell and broke hip at that time I had to put her in a nursing home. I have run the emotion ladder. I was so use to having her to talk to hold that is what i miss most. she has been in nursing home 2and a half years. I would like to get on with my live I'm 77yrs old in pettey good health. I would like to meet sommeone in South Dakota.
I am new to the forum and started a new discussion but no one has replied. Does anyone know how I can protect my hub's SS and his retirement from a nursing facility? He has Alzhiemers and we are in Chapt 13 also. I have talked to one Elder Care Attorney and looks like I have to go retain this one who is the best in my state altho she is 3 hrs away. I am in SC. He is very violent unless medicated and I would appreciate any help.
gldncrystl i brought your original topic up for you to read. there are several replies. each state is different so its hard to offer any suggestions the best thing is to visit with the elder care atty and they will know how to go about qualifying you for medicaide. divvi
This site was recommended to me by some friends who find this a very warm, welcoming community -- where bullying is not tolerated.
I'm happy to be here, because I need people who understand. And, in turn, I hope to offer compassion and understanding to others.
Joan, I was reading your welcome and the last two installments of your blog, and I have to say you speak to so many feelings that are in my heart!
I have learned that everyone's situation is different, there are so many complexities affecting how we deal with our spouses' illnesses ... and rather than dole out unwanted advice or lecture another, it is so much better to offer a willing ear, a warm hug ...
Thank you to my friends who led me here. You have no idea how much you've soothed my heart.
Welcome, ms magic. Glad you've joined us on the journey--not glad for the "situation" that led you here, but glad you can share insights and experiences with us as well as encouragements. This is indeed a caring site.
Hi and welcome to our "club" no one ever wants to have a reason to join this "club" but when you need a shoulder to cry on-an ear to vent to-and a heart to try to help your breaking one-This is the place to be. There is nothing you can say here that would shock anyone -we have heard IT all.ANd there is always someone to listen and not preach to you. These folks are the greatest-they let me scream-shout -cry- vent all I want and have STILL not thrown me out so they must be GREAT. Hugs to you from WV.
Welcome. You have expressed what I intended for this website - that it be a place of understanding and compassion, and that my blogs make all Alzheimer Spouses realize that they are not alone in their thoughts, emotions, and fears.
I found this site in a round about way, and I thank God I did!
I was reading on a coconut oil site from a friend in India, he sent me a link. Off to the side were all the adds, and somewhere in there I saw Alzheimers spouse and clicked on it.
I just finished reading an entire thread and found out that someone else (a whole lot of some one elses!_ feels just like I do. My hubby was diagnosed a little over a year ago and is proving to be a handful, not so much physically--but his mouth and degradation and lack of respect is just heartbreaking. Today is our 24th anniversary(no he hasn't treated me like this ever before-I would have left him a long long time ago) but he went out of his way while in one of his ugly tirades that there would be no reason for celebration of this 24 years. Oh, I got my feelings hurt so bad, and truly do try very very hard to go past all that bs and remain kind. However, I did go on strike tonight and refused to cook supper. I find it very hard and end up feeling used and abused(inspite of the diagnosis) to carry his supper and put a napkin on his plate when I have been told all day long that I am pretty much useless. The personality change has just thrown me clear off my feet. I have lupus and cushing's and adrenal insufficiency and was in the hospital for 3 days just 2 weeks ago because I can't keep up, but I try. However, my nurse told me she is seing such a decline in my well being that she doesn't know how long I can keep this up. But the shining light of the day is I found a whole lot of other people who are trying very very hard with no credit or thanks whatsoever!!,
goodness cookiemarie., you do have your hands full dont you? those tirades and snippy remarks can get to the best/worst of us for sure. and it doesn tmake for very happy camping to serve supper with a smile. and with your own health issues, yes you have to be sure to not overdo, and have your ducks in a row just in case. we are a good group of very caring and nice folks who have been pushed kicking and screaming and praying alot into the world of dementia. we learn as we go and from others before us. good to see you have found a new family who understands all you deal with. and by the way. a happy anniversary to you just the same! divvi
Welcome to my website. I started this website in 2007 exactly because of what you said - I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now 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.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
If it appplies to you and your spouse - there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Speaking of blogs, I wrote many about the verbal abuse my previously wonderful, kind, loving husband was spewing at me. It was emotionally devastating, but is part of the disease - not that knowing that is any consolation when you're being insulted and raged at. I wrote one blog that organized and summed it all up. I highly recommend reading it - http://www.thealzheimerspouse.com/3ADsymptomsnotknown.htm
I am also new here. I am so happy to find a place where people understand - and where the founder of the site, Joan, feels much the same way we do about what this disease has done to our relationship with our spouses/partners!
It's wonderful to talk with people who understand and who offer hugs and words of compassion.
I know what you mean about verbal abuse. My husband has periods of that, and some days I leave to work with tears streaming down my face. Yes, I know it's the disease, but as Joan said above, it can be emotionally devastating. There are only so many times I can say "he can't help it." Some days those words don't soothe my soul at all.
I deeply need to feel appreciated, and yet I don't think he is capable of forming those thoughts. :(
Welcome ms. magic and cookiemarie to this wonderful website. Many of us here are also dealing with our own health/medical issues while being the primary caregiver for our spouse, so we can truly understand your challenges, cookiemarie. We also understand the emotional devastation of caring for someone we've loved while watching them turn into someone we don't know and at times revealing a monster within. you will find that although our circumstances are different in some ways, they are very similar in others.
This website is surely the answer to my prayers. I have been trying to find a good support group, but once I would say how I really feel and am treated, no replies came--it was dead silence. Joan you are such a blessing to have started this group that owns their feelings and are not ashamed of feeling this way. We are only human. with people who don't understand they say, well just pack your bags and leave! yes he is mouthy and I so understand the lady going to work with tears running down her face(what a courageous person). We all seem to understand that this is the disease not the person we knew or that mis treated us for years. Most of my friends have just given up on me because they think I should leave--they have no concept of how full of rage and exhaustion that we can be and at the same time very commited to getting through this the best we can. It's like I have been in a long dark tunnel for over a year and no one understood what I was saying--and now I have this wonderful honest group. I slept well last night because I know now for sure, I am not alone nor am I bad for feeling this way, nor am I under some obligation to dump my spouse to have your respect. Joan,Ms Magic, Divvi and LFl thank you I will follow and learn May God Bless, Marie
Welcome Ms. Magic and cookiemarie. I believe many of us felt alone at the beginning of this journey; although it is certainly one of life's greatest challenges, we have learned how to survive and deal with each problem as it comes. The Alz Association says there are 5 million people in the U. S. with AD at this point; so there must be at least 5 million of us caregivers trying to cope at this very minute! Joan's website is a wonderful resource for those of us who have spouses with dementia and I know it will be a huge help to you both.
Bluedaze--could you please sing us that song (Little Miss Magic)? I've never heard of it.
Hi, I am new to this site. I have read so many post that could be me. cookiemarie, Your comments above could be my life. My Dh was diagnosed over 5 years ago, but I knew that there was something wrong and sought for answers for 3 years prior to that. The personallity change was so extreme. Everytime he gets frustrated with something I am the recipent of his anger. He is not physical but verbally abusive. I am worthless and poor excuse for a wife. He is always telling me he can't live this way anymore and I should leave. He paid for everything and I made pennies. Sorry, to rant it just really gets me going to think of it. He will apologize later or completely deny he said those things. Of course, I know it is the AD and he does not remember. Well, sometimes I think he does. He has always been self-centered in our marriage. I think if he had not been diagnosed with AD we would not still be together. We have been married for 27 1/2 years. He was married before and had 2 children and we have 2 together. I love him and stayed before the diagnosis and will stay through it. My heart goes out to everyone dealing with this. This is a wonderful place to come and read and know that I am not alone in my feelings and what is going on in my life and get support. I am 50 years old and my husband turns 60 in a couple of months. Thanks for listening and being here.
jackiem29, welcome to your new virtual support group. Sorry you have to be here, but it’s a good place to be. Like you have already noticed, you will have much in common with pretty much everyone here. You can learn much from the “seasoned veterans” here. Come back often to talk, vent, cry & even laugh (we have some very humorous people here. We are here 24/7. Others will be along shortly to also welcome you. ((HUGS))
welcome jackiem29. hoping you find good handson help and support with this great group of folks. the common demoninator is dementia spouse and how to acheive the best care for them and us, while on this miserable journey. please join in any topic! divvi
To Jackiem29, jgranny, and anyone else who is new,
Please excuse the generic welcome, but if you read the computer problem thread, you know that I simply can't get around the Internet like I am used to, and am doing the best I can with what is on the laptop.
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now 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.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
If it appplies to you and your spouse - and it definitely applies to jackiem29 - there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Speaking of blogs, I wrote many about the verbal abuse my previously wonderful, kind, loving husband was spewing at me. It was emotionally devastating, but is part of the disease - not that knowing that is any consolation when you're being insulted and raged at. I wrote one blog that organized and summed it all up. I highly recommend reading it - http://www.thealzheimerspouse.com/3ADsymptomsnotknown.htm
Welcome to paul c-he posted today under the thread dealing with support groups and his spouse has FTD. This is a wonderful site which has very wise and seasoned caregivers who check in frequently and offer invaluable advice. There is also a wealth of information for those caregivers for people who have young onset dementia. I am sure others will be along sgortly to welcome you.
I just joined, from London, Ontario, Canada. My husband was just diagnosed with Alzheimzer's in Mar. 2012. I realize that I have a long road ahead, and will need help.
Welcome to my website. When you feel comfortable, please tell us more about yourself and your husband. It helps us to help you if we know your ages. I highly recommend that the newly diagnosed go to my home page - www.thealzheimerspouse.com, look on the left side where all the resources are, and click "New Member/Newly Diagnosed. There is a lot of information in there that will get you started in the right direction. If your husband is under 65, there is a good section on EOAD (Early (now called "younger" onset Alzheimer's Disease).
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now 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.
Thank you for the warm welcome all. It indeed seems to be a terrific website, with many links to great information. I see the Alzheimer's Project is here, which comes in a package of 3 DVD's and we got this from our local library, along with a couple of books. We are thinking the more information the better, especially me.
My husband, Gord, is 75, and I am 70. We have been married 31 yrs. and this is the second marriage for both of us. We have no children, but Gord has 3 daughters from his first marriage. They live in the same city, but the two we see are very busy with their own families, and business.
I first noticed Gord was having problems when his sense of direction seemed "off". We had rented a condo in Sarasota, Florida for a month and decided to drive and make a long trip "away from the snow", at the end of 2008. He would drive somewhere, and forget how to get back to the condo even if it was a short distance. This was a very different behavior for him. We are both retirees from Nortel Networks, and in January, 2009, we found our company had filed for bankruptcy. So our company pension fund was underfunded, so we got tied up with concerns about that, so any symptoms Gord had, were easily dismissed because of stress, company worries, etc.
In 2010, things settled down a bit with our company situation, and memory slips got significant enough to have the family doctor send him for memory tests in June. He didn't do too badly. In June, 2011, he went for followup memory testing. Worse, so concerns by the doctor about safe driving, so sent him for testing with DriveAble. In the accessment, 2 areas were normal, 2 below normal, and 2 well below normal, but they passed him for driving. He drove for awhile, but a couple of near misses happened, so I took over all the driving. I wasn't the best passenger at the best of times anyway. We had a few little "adjustment" problems with that, but he seems okay with it now.
So gradually the memory and logic seemed to slid, so the doctor referred him to a Geriatric Specialist, at a hospital here which deals with all these things. We went through many tests for about 3 hrs. and the Dr. was not sure if he had gone from MDI to early AD, so he sent us to his affiliate, a Neurophyscologist. This doctor, went through about 6 hrs. of tests. So the diagnoses was official in March, 2012, Alzheimer's. It was is a relief to have a diagnosis.
So to date, Gord is on Aricept, 4 weeks at 5 mg., and 2 weeks at 10 mgs. He felt better physically almost instantly. He had major pressure, electrical shock type sensations, throbbing in his head, so on medication, these went away. I don't see much difference in brain functions, some days worse, some better, but he thinks he is better because he physically feels better. So far I don't think he is too bad, and I'm trying not to "sweat" the little things that are different then they used to be.
Last week I started with an 8 week Caregiver Group offered at a nursing home that has an Alzheimer's Wing, and an Outreach Clinic attached. There is about 25 in the group, and several are dealing with a dementia called Lewy, some with Frontal, Alzheimer's and some not diagnosed yet, because they can't get the person to admit to anything being wrong. The first night was more about introducing ourselves, and saying a bit about the person we were caring for. Some went into quite a lot of detail about what they were dealing with and really "venting", so I guess maybe, what I am involved with is really a therapy group. This week two doctors are speaking about the medical aspects, so I have hopes the course won't be about a few "ranting and raving", while the rest of us are "freaking out" and chewing our fingernails!
So any advice or comments on what has happened to date, would be appreciated. I guess we are starting year 4, but maybe the count starts at the time of diagnoses? Also, I am a Type 1 Diabetic (50 yrs.) on an insulin pump, so will have personal health issues in going forward I think, so any other Type 1's, please let me know, I think I might need your special help, from time to time.
Im new .. just joined today.. not sure what im actually hopeing for.. just had to reach out..
Im not the main caretaker its my mom who is 80 . probably at least 3 yrs of alzheimers and now in what the neuro says mild to moderate i think she is further along.. like stage 5.. and right smack in the middle of it.. no short term memory.. wont bathe or change her clothes..listens in all the time on every conversation but doesnt understand so makes weird unfounded comments.. thinks all of us are scheming against her.. hates that i go help dad.. who is 83 and really struggling with doing all of this. dad has lost 15 pds since january .. altho he was bigger this could be too much and im getting him to the dr.. he is definatly having his own issues.. memory .. and understanding all sorts of things.. he has major hearing issues and we have had alot of trouble getting him to get his hearing aides.. but they are due friday.. whew!.. mom is on namenda 5mg am 10 mg pm.. we wont be rasing it .. we dont know if its really helping.. and neuro put her on seroquil .. we had her on ativan .5 am and .5 pm and yes she slept alot but was easier then.. since we went to seroquel i think she is brighter ..does more things but.. has gotten weird with things like wants all her pill bottles opeend over and over to look in them.. questions everything.. says we are giving her poison.. she wont accept she has any sort of issue.. except her neck hurts .. something the dr says is real.. and yes she cant turn her head well we try all the time with physical therapy . its pro ably arthritis.. anyway thats my first hi.. hahaa.. idont knwo what everyone says yet.. but i'll read and learn.
Hi to all I am new to this website and hoping to "meet" some new people dealing with this horrible disease. I am 65 and my husband is almost 74, quit driving 2 years ago and basically sits, eats, sleeps. I take him to the local senior center when he feels up to it. He was diagnosed in 2008 after 5 years of in and out hospitalizations for peripheral vascular disease and almost losing his right leg. Honestly I cannot believe he is still alive considering what all he went through.
I attend regular support groups which have helped. I am struggling to live my life but it is difficult. I am wondering if anyone else feels their own life "slipping" away. We have 5 sons who live close by and are supportive but all work and have young children and have just started asking for their help and assistance. One of my difficulties is finding people to do things with. I have friends who are dealing with the disease but they all seem to have their own lives. Any suggestions?? I am going to a retreat day in Sept with one of the people I met in the support group, which is really my first "excursion." I have not traveled much and would love to travel but not alone. Has anyone out there done any traveling with a group?? My kids are planning a vacation next summer and have suggested I leave him in Respite which Ithink I will do so I can get an honest to goodness vacation. I am already feeling terrible, as he does not think he is that bad.
So far he can still shower and take care of his personal needs. Thanks for all your support. Goodness knows I certainly need it.