Hello, I doubt that there is anyone else but me sitting at the computer on a Saturday, looking for a friendly word. Stumbled on this site and thought I would give it a try. I am a 61 year old male, who's wife is in the mid stages of Alzheimer's. There is not a support group, within 35 miles of where I live but we do have adult Day Care, which is a real blessings. Well, don't want to type too much and not get a response, which is typical of a lot of sites.
Welcome to this site, ronnyd. So sorry you have need to be here, but it's the best place to be to rant, rave, scream, whatever it is you need to do t the moment. Yes, Sat. afternoon it is a bit slow here - but others will be along soon. You will get responses, no judgments, just a lot of caring and helpful people traveling the same rocky road you are.
Welcome Ronnyd....this is the BEST site for spouses who have a wife or husband suffering from some form of dementia. If you want a site that doesn't respond, get involved, offer advice (some of it difficult to hear) then you've come to the WRONG place. We open our arms and hearts to all new members who we embrace as a new family member. So now that you're here, please tell us more about your situation...how long has your wife had dementia, your ages, how are you coping, etc.
Based on my experience as a 5 year member of this wonderful site, I could not have made it this far on our dementia journey. First I asked questions to get practical answers on how to deal with a variety of issues I was unfamiliar with regarding dementia and dementia behaviors. Then I started seeking moral support from our members who had much more experience on the dementia journey and what I could/should expect. Now 5 years later I am able to give back and help others who are just beginning the journey or who have finally found a safe place to ask questions, bare their souls, commiserate or whatever. I feel good that I can share my experiences and in doing so can help others.
Wrong!, you will soon learn that lots of us sit at a computer on a Saturday afternoon! Welcome!! I am so happy to hear you have found Joan's wonderful site! It has been a real blessing for me and for lots of others that are going through this terrible time. There are so many very knowledgeable and so loving and supportive folks here. You will find lots of help and lots of hugs here. You can cry, like me, or rant and rave about your life or problems with just about anything you can imagine that happens in the lives of a dementia caregiver. You can also find something's that will make you laugh until you have a tummy ache.
I am sorry that you are here however, this is a wonderful site to get support....vent....ask questions.. not only about the disease, but you can share the emotional roller coaster ride we as caregiving spouses endure.
This site is exclusively compromised of only spouse caregivers so we understand exactly what you are going though. As Vickie stated, lots of caring and helpful people traveling the same rocky road. No one will ever judge you and we can safely admit our true innermost thoughts.
Tell us about yourself a little and your DW (dear wife). We would like to get to know your situation better.
My situation- My husband is in the early stage 5 of alzheimers with frontal temporal dementia. I recently relocated from the Midwest to Arizona to have family support from both his family and mine (prior marriages). Well, I was delusional thinking that would happen because now I am living in a new city with no family support and only a few friends. I am also in my 60's and my husband is in his late 70's with almost a 14 year age difference. I have been a member on the message board approx. 7 months and I have found this site more beneficial than a local support group, which for the most part, isn't an exclusive "spouse only" association.
Best wishes to you ronnyd....sorry you have to be here but this is THE place to be.
WELCOME TO OUR GROUP OF WARRIORS! Yes we are quite a combination for folks, some young, some older and some of us in between. We come from different locals and different backgrounds but we all have one thing in common, we are all dealing with the onslaught of dementia. Some have been here a long time, others more recent and when you see a name with a * it means the spouse who suffered the disease has passed away and our *s are here and help in so many other ways, we would be lost without them. There are some gents here so you are not alone. You will gain sympathetic ears, volumes of good suggestions on how to sort out decisions and sometimes it is just a good place to vent. There are only two subjects we do not delve into on this site, religion and politics. That is a rule!
I hope Phranque and Marsh pop in soon. And we have a wonderful scribe who goes by the name Wolf. You will make friends here AND there are times when we plan virtual parties and tell funny stories....you might see a heading with an " Alrighty Then"..It is not all dreary here.
So when you feel ready you can share your story and you will find there are many who will chip up with helpful ideas and words of support.
ronnyd, there are lots of other male caregivers on this site, and I assure you that you won't be ignored if you post questions, or laments, or whatever. I found this site about five years ago when my wife of almost sixty years was progressing from mid to later stage AD, and information and support I got here was of tremendous help to me in knowing what probably lay ahead and how to deal with it. I lost my DW about four years ago, but continue to visit this site often to keep up with what's going on with cyber friends made here, and hopefully to offer help myself from time to time. Go ahead, tell us more about yourself and your situation, where you live, your ages, questions you may have, whatever.
Ronny's. Another M caregiver here, DW was Dx'd in '07 now stage 6 . Bad genes her mom had Alzheimer's too. you came to the right place. Here You'll guidance and suggestion on how to cope/with just any problem you'll encounter. Whatever may come up some else here has "been there, dine that! Welcome to the club none of ever wanted to join
ronnyd, I'm glad other men have checked in. Most of us don't post as often as the women. I have gotten a lot of help, particularly from the women (do any of you gals remember my problem a few years ago with panty hose?). My wife of 59 years is in stage 6. I still have her at home, but she goes to day care 6 days a week. Fortunately, she is generally pleasant and happy in her own little world, with no rage that others report.
Welcome ronnyd! Wish you didn't have to become part of this group of spousal caregivers. We are from all over the world...mostly the states and I'm one of the Canadians that is here. Spouse is in stage 5 with rage issues and now is on the priority list for placement. I'm 55 he's 78 married 33 years. Been kicking around here I think since '07. This site has been a god send for me.
Like was said before, any question you have someone has had to deal with it. Looking forward to get to know you.
Welcome Ronnyd from another one of the Canadians on the site. I'm relatively new to the site myself (April 2013). My DH is in stage 5, 73 years old, I'm 61, been married 37 years. We would have to travel an hour to find a support group, which puts it out of reach, so this site is an absolute godsend for me, particularly in terms of emotional and moral support. I hope you find the same.
I DO remember dear Marsh years back ... when he asked us on this site if we could tell him how to put panty hose on his wife. I still smile when I recall the countless replies from all of us that seemed to come in all at once., and all were in agreement. FORGET the panty hose!! or use knee highs. I couldn't imagine how anyone could put panty hose on another person, and, bless his heart, he was trying his best back then to keep her looking very nice....and as she had dressed herself before.
Marsh is, indeed, a veteran on this site and I always enjoy his posts. Fascinating man!
What's so special (among many things) is that all of us form a family like group, and we worried about a recent's member's wife when she was dying, and we hurt for him. We practically held a vigil. I'd check every morning to see if he had written an update. We know so much about one another, maybe more than family or friends do in some cases. My DH has been gone 4 years, and I'm still here. How do you explain that? We will all respond to your problems and maybe give you more advice than you ever wanted. We're good at doing that. You'll learn from us and we'll learn from you.
Welcome to the family of friends who share a very unique connection. To prove my point, although I have never met Marsh, I know where he lives, where he went to Medical School, know about his hobby of sailing in years gone by, that he has a daughter and a son, that he is a Rotarian or perhaps another civic organization. He's been on radio shows, featured in news articles and is a valuable spokesperson for Alzheimer's Disease - That's just one of us. We truly care for one another, and we think of each other and care for everyone's trials and tribulations. Welcome!
NancyB*, You remind me, whenever one of us has a LO in crisis, or even in the last days of glimmering life, we do stand vigil together. It is unique to our group, I think.
Marsh...the panty hose...yes... I came in about the time this discussion was going..I had forgot how long I have been on the boards..
It is amazing how long many of us have been coping with this disease as caregivers. The help and advice found among the veterans for the newer members is valuable. And it is for those whose LO's are enduring mysterious changes, that have been here for some time, a resource of confirmation that we are doing the best we can, or that something is " part of the disease"..
Of all the resources, this one is by far the best for support and friendship.
welcome ronnyd! you would be surprised to find that many of us are at our computers all hrs of the day and week. here at joans there is usually someone to offer a helping hand or lend an ear at all hrs of the night/day. lots of useful info in prior posts and topics if you look thru older pages. divvi
ronnyd, one more welcome from a male member of nearly 4 years. I come to this site regularly to read new posts and learn more information. Those few times when I do post a question, I know I'll always receive helpful responses. I'm 66, wife just turned 67, and she was diagnosed at age 63 after showing clear AD signs (in my opinion, but not the opinion of our initial docs) for more than 3 years prior to that diagnosis. She is now moving through moderate stages and just last week, when her urinary incontinence issues worsened considerably but she refused to wear Depends, a suggestion from someone on this site got me through that crisis. I have also had a nearby weekly support group to go to, my wife is now in day care programs 4x/week, and since last month she has been on a room waiting list for Assisted Living. This site has gotten me through some very tough times, ronnyd, so welcome aboard. Joan's blogs are always 100% dead on expressions of what so many of us are feeling, and those who visit this site make helpful comments all the time. You have finally arrived at the single best internet site for AD spouses.
Thank you all so much for the warm welcome. My wife is 63 and I am 61. The story goes, two weeks after my wife was diagnosed with Alzheimer's, I lost my job, lost home, etc., picked up and moved to a little town in Kentucky. My wife goes to a Adult Day Care, for which I am most grateful but I have no friends and nothing to do. Our kids and grandchildren are in Cincinnati but travel on my wives part is very difficult. She can't go to the bathroom on her own. It is very stressful to try and find someone in a rest area on the highway, to help your wife find and use the bathroom. In many ways, I am blessed but feel very down at this time. My wife is 100 percent dependent on me and refuses to discuss the possibility of a nursing home. Sorry to ramble but feeling very lost
You are not rambling on, but sharing! Yes, this is such a lonely disease for the caretaker. So much frustration and many of our so called "friends" and family have ditched us. Traveling is not a good option here either (more confusion for spouse) as they do like their routine.
I am so sorry that you have lost so much in such a short time. I am blessed that I still have my home, but with this disease and its expensive costs it can really emotionally and financially drain us. It's bad ...terribly bad...to slowly lose your spouse, but then in additional. I am just so sorry for you....((hugs))
Yes, my spouse to is 100 percent dependent on me also however, he is not aware he is. He thinks that he can navigate though life still (perhaps this, is some ways, is a blessing). I have not discussed the possibility of a NH with him because he would only get more agitated (don't want that) plus he really can't engage in meaningful conversation. I would be better off discussing his care with my dog!
Please take care. I am glad that you have discovered this wonderful website. It rocks! The board is very supportive and members will rally on your behalf. Also, there are many informative articles to read regarding this monster disease.
Sending positive thoughts, prayers, and best wishes. (((hugs)) Lullie
Thanks Lullie and I accept the hugs, thoughts and prayers. My wife (Sally) and I have been married 32 years. She was diagnosed at age 58 and is 63 now. It has been rough but I have a feeling the tough part hasn't even started yet. I read the Bible at least an hour a day and I guess my faith is not strong enough. It tells me not to worry or stress. I try but it is not working. I pray that you have the strength, knowledge and wisdom to deal with your husband. Ron
ronnyd, So sorry to hear how young you are. I am 54 and DH is 62. This is very hard when they need help with the bathroom. Our DD is a big help, she is 17. When you feel lonely just come visit us. Someone is always here. Sorry about the loss of the job and house.
Not everyone needs a NH. We are at the end stage and with Hospice and I and DD have done it all ourselves.
I will say, early on I worried about so many things happening,wandering, incontinence, anger issues, and now towards the end. So many of those worries did not happen. So a NH may not happen either. Take it one day at a time and if need one minute at a time. If she does not want to talk about the NH, don't. If she needs one in the future most likely she will not be able to talk about it or fully understand what is happening. So no need to worry either one of you with talk of this right now. You just need to quietly make plans if needed. We call them fiblets. It is so we don't worry them needlessly.
ronnyd, so happy to see another Kentuckian on here! We're in the Lake Cumberland area. As everyone has said, try not to worry too much about what "might" happen - just one day, one hour, one minute at a time! Easier said than done, I know. No travel for us either. But..the rest stops usually have a 'faimily' type rest room where you could go with her, but if not, just go with her anyway. You can always explain and most people are understanding.
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".
Your wife is one with EOAD ( EARLY ONSET AD - now called YOUNG onset). We have four sections on that in the resource section on the home page (www.thealzheimerspouse.com)- 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. As for EOAD discussions, 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.
I must respond to one of your statements. You said that your wife refuses to discuss NH placement. She has Alzheimer's Disease, which means that her reasoning and judgment are badly damaged, if not completely gone. Unfortunately, you will learn, as we all have, however painful it is, that they no longer get a vote. Life discussions between husband and wife that used to involve compromise and lengthy interchanges are no longer possible. You are in charge, and you make the decisions. When it's time for a NH or dementia unit in an Assisted Living, the decision will be based upon her need for care and your inability to provide it on your own. The decision will be between you and her doctor.
Hi Vickie and Joang. Thank you so much for the kind words and info. Vickie, we are in liberty Ky, a very small town. There are no family friendly rest stops between here and Cincinnati, where our family is. One time I got her into the rest room and didn't realize there was a side door. I asked a lady to check on her for me and she said nobody is in there!!! She went out the side door and a truck driver brought her around to me. Stress!! Joang, thank you so much for starting a place like this, you are a special person. I will explore all the sites available to me on this site.
ronnyd, I know Liberty well - we are in Somerset -only about 30 miles, I think. My husband also goes to DC (daycare) here, at least he goes most of the time, only in the mornings, though. We are both considerably older than you and your DW (dear wife), he just celebrated his 90th birthday! I'm 73. This site has been my lifeline -you will find it comforting, also.
Thanks Vickie, my heart goes out to you and your DH. I am younger than you and feel tired and overwhelmed. You have to be a special person to handle all of this.
Hi ronnyd & welcome. I'm glad you found us & like everyone else said, this is the BEST place to come when you need information, or you want to tell us how your day is going or you want to RANT & we also have humor here cuz as you know......if you don't laugh you'll cry. SO come back often, like the others have said, someone is usually always here.
Welcome ronnyd - This site is still a place for me to go when I am really down. Our journey is over and I am alone and folks here will "rally around" and help me as they will you on Any subject. We even have fun times planning "virtual" picnics and writing stories. This gives us a time to laugh and a brief respite from reality. So sorry for your reality at this time - again welcome to Joan's.
I am sorry you have to be here, but you have found a great group of caregivers here that may not be able to take all of your pain away, but they do make you feel better with great cyber hugs!
you are in the same leaky boat that I am in age and situation-wise. I have seen signs lately that my DW's condition is going from mid to late stage. I thank God that I was able to find Joan's website and all the great people here on this forum that I can vent, ask questions, express frustration and not be judged. Hate that you have to go through this, but you re not alone.
Hi ronnyd, I'm from West Virginia. I was in your and Vickie's neck of the woods last Nov. I went to a Michael Bolton concert in Richmond Ky. You will make a lot of friends. You might be interested in Facebook's alz spouse too. It helps to put a face with a name.
I will just echo that is is a great support place and as I am sure you can tell by now, people here really care. I don't post much myself but read here everyday. I was 50 and my husband 64 at diagnosis with Frontal Lobe Dementia secondary to Alzheimer's. Looking back I can see he had it many years prior. I too lost my home and became unemployed, bankruptcy and so forth. Keep the faith, I know it is hard. We are here for you.
Hope all our caring responses have encouraged you and you will be a part of our group.
Sherizee. Glad to hear from you. I follow your blog daily and relate so to your honest and touching journey. I recommend your blog Living in the Shadow of Alzheimer's to all our members. Very brave of you to share your innermost feelings and daily life to let others know they are not alone.
ronnyd and all other alzheimer spouses I am amazed by our collective strengths!
Oh I read you loud and clear on faith. I feel exactly the same way as you--- doubting my strength though this journey. I question my faith and worry about the future. Then I am reminded of Hebrews 11 and our great examples of faith (Moses, Abraham, Isaac etc.)
Several years I was in a huge trial (separate from my spouse's alzheimers/FTD disease) and a dear "sister" gave me a book "His Princess Warrior" by Sheri Rose Shepherd. This little book is/and was so uplifting and encouraging. You may wish to purchase this for your Sally...plus you can also find strength and wisdom from it (change the name...to "His Prince Warrior"--lol)
Press on.....this is our wilderness journey. Hopefully soon we too will pass into our promised land!
I hope that your week in be a good one. That you will find comfort and peace in the mist of your trials. Be good to yourself!
I am new to this site. My dh has vascular and az. He was just diagnosed in June. He had his second appointment June 10th. Had an accident that very afternoon. I called the Dr. The next morning. He wanted to see him that afternoon. Told him he had az (was told 2 years ago had vascular) Then said he should not ever drive. Tomorrow the car should be ready aug. 9. He says he WILL DRIVE. I've slowed them getting the car done sooner. He goes to driver control Wed.. And they will probably revoke his lic. But what to do till then? He has a set of keys for both cars and protects them both. His anger is getting worse.
Welcome to this wonderful place where you will find advice, information, and understanding. The driving issue is a real difficult one to deal with and if you do a search (at the top of this screen) on driving you will find many discussions on this topic.
My DH insisted on driving, even after he failed a drivers assessment test. I had his Dr. contact the DMV and the State finally sent him a letter rescinding his license. I kept my own copy of the State's letter and had to bring it out every once in a while to remind him. I also explained to my DH that we could lose everything we have if he drives with a rescinded license and has an accident, even if it isn't his fault.
You might want to talk with his Dr. to see if he will prescribe meds for your DH to manage his behaviors. I told my DH that his anxiety meds were "for his heart". Since I gave him his meds, he did not read the fine print or know what the meds were for. Everything was "for his heart"!
Good luck with this one and come back often. We are here to support one another on this hellish journey.
By whatever means---get hold of his keys. If needed substitute dummies that won't work. If needed use fiblets ( small lies, to do no harm, but to facilitate easing the situation). As Gourdchipper suggested, disable his car. Ask his Dr. for meds to calm his anxiety about not driving. Use any and all sug,gestiojns needed to keep him from being behind the wheel. My DH was in the hospital--just Dxd. I couldn't bring him home until they, knew the van was not on the premises.
bjblyghtnin, welcome! I pulled up a thread for you on the driving issue, many of us here had a difficult time with this. Please do consider speaking with his doctor to get him on some medication to relieve your husband's anxiety. This is a trying time for you and my heart goes out to you.
Thanks Nikki. He has just in the last half hour gotten back to being nice. He gets mad, then it's like nothing has happened. He is on Zoloft, I.once asked his Dr. To up it, he said he couldn't. I am thinking of just going thru the memory clinic, his Dr. Is no help. And what ever I tell him, he tells dh. I don't think the mimatine is working, he may be too far along for it to help him. He is just like some of the above letters describe their dh. I am so afraid he will have an accident before Wed. I will keep reading and learning. Bell you all.