Hello Everyone, I am recovering from total burn-out because my father, my mother and my husband all had memory loss. My father died of end stage dementia (probably mixed vascular and alzheimer's), my mother has dementia associated with Parkinson's probably mixed with vascular and alzheimer's, and my husband has some mixture of memory problems that has not been properly diagnosed. I do not have the support of family member in either my own family or my husband's. My recovery from stress and serious depression developed from desperation--I simply could not go on if things remained the same. I shifted from trying to be loving and helpful to others to my own survival. At the bottom I resolved to save the parts of myself that were stolen by the diseases and dysfunction of others. What interests me now is how to salvage who I am and to limit the impossible demands I had been enduring.
Wow, Lilly ... you sure do make me count my blessings!
I am very sorry for the loss of your father. My mother died of end-stage AD, too, so I know what that was like for you.
Is there something we can do to help? Perhaps you could tell us just a little more ...
Are you trying to care for your mother in your own home? Is it time to think about placing her?
You've told us a bit about your husband on another thread (Personality Changes), and it does sound as if maybe he has something like FTD rather than AD. Is he refusing to see a doctor, or is his current doctor just not being very helpful? It sounds as if he might still be young enough that most doctors would resist diagnosing a dementia ... do you need help finding a qualified neurologist?
You've been caregiving for a very long time ... but perhaps you still could use tips on how to get respite services, or financial aid for healthcare providers?
Or do you just need to come here to vent, where you know we will all understand and sympathize, and offer you a soft shoulder to cry on?
Sunshyne, thank you for your kind comments. I already received important help because I looked up vascular damage to the frontal lobe and it fit my husband exactly. It has not been possible to get a clear diagnosis because he will not agree to testing, but we see a neurologist every few months. He has been diagnosed as bipolar, has sleeping disorders, thyroid problems and so many other physical problems that could be interfering with his memory and cognition. The MRI showed vascular changes deep in the white matter and atrophy of his entire brain. There are also lesions from silent strokes that are probably continuing because of high blood pressure. He is taking Aricept and Namenda, Seroquil and Depakote. What is astonishing is his risk taking behavior and defiance of doctor's orders. He can be out of control at home and behave perfectly well in public. Many doctors did not believe me, so it took years to get the proper medication to reduce his strange behavior. Even at the end of my father's life, there were less severe safety issues than with my husband. My mother, by the way, lives out of state and has 24 hour a day care. But my sister who lives nearby ignores my mother's medical issues with Parkinson's.
Well, Lilly, at least, if you've been reading very many of our earlier threads, you know you are not the only person who has had trouble getting the doctors to believe her! Or, for that matter, that you are not the only one with a sibling either in denial or who just doesn't care. So very frustrating ... no wonder you burned out. It's good that your mother isn't living in your home, with you trying to care for her yourself -- but at the same time, I'm sure that it's very frustrating to have her so far away, where you can't see her whenever you want.
Have you seen the article on anosognosia? It explains why some of our spouses simply do not believe that they have any problems, need any help, or should follow a doctor's orders. I think Joan probably has a link somewhere, but it's easier for me to find it in my files -- you can download it at:
My husband is blithely unaware that he has problems, but very fortunately for both of us, trusts me enough to try to behave, and does what I ask him to do (when, of course, he remembers!)
Sunshyne, Thank you so much for telling me about the article. My husband will be home soon, so I printed it and will read it later. Thank you also for your caring and support. I have learned so much from you and other members.
Lilly-I think all of us have experienced "outsiders" not seeing anything wrong. Even after the police came after my husband a neighbor persisted in telling me he had just spoken to my husband the day before and he was fine. My feeling is the brighter the person the longer he/she can act "normal" especially with non Alzheimer's dementia. My husband has FTD.
Hi, I'm Maggie, age 60 and married to Jerry who is 80 and has mod. AD. We live in Carlsbad, CA and are not near any immediate family so I am his only caregiver. I work 3-4 days a week as a college professor (it's my saving grace for sanity). I have found a live-in gentleman who works Fri-Sun in a retail business and is able to be here when I work during the week. The only problems I have encountered are delusions or dreams that the companion is my "boyfriend" and he gets angry and somewhat vulgar. It seems to pass when it gets to be morning. Sundown and the middle of the night are pretty upsetting as he wakes me up and accuses me of having an affair with the live-in caregiver. I would appreciate any advice as to how to deal with this. Changing the subject does not work, Jerry only gets angrier. I have also noticed a renewed interest in sex on Jerry's part, particularly at inappropriate times of day. He has not been interested in sex for years. Also, any advice? Thank God for this forum. Love to all, Maggie
Maggie! Hi there, hello, welcome! Another May-December couple for Evalena's list, I see. (You will have to enter your ages on Kadee's threads for the ages of the caregiver and the spouse, though, if you want to be counted. Kadee is quite firm about respecting privacy.) AND, by george, another Californian! We're finally gaining on Florida.
Sounds as if your husband may be "sundowning." There is a really good article about this around here somewhere ... I shall go look for it for you. Back in a bit.
Drat! I thought I'd beat Sunshyne in welcoming you to our wonderful crew. Watch out for Sunshyne. If you ask her a question she will give you more information than you ever wanted to know. :-) Do you have a cat? Kitty will want to know that. You'll fine this site a wonderful place to learn, scream at, share your deepest feelings and know you are with people who truly understand the monster we are all dealing with.
Thanks Sun & blue for the warm welcome. Yes, we have 3 kitties - all girls, all rescues. Rosie, Maggie & Rizzo aka Houdini! Maggie is my middle name and we named her after me since we are both redheads. At least I was LOL.
I have found the article, in a thread titled, amazingly enough, "Sundowning", which I've brought to the top for you, Maggie.
By the way, we also have another college professor in our midst, Charles Summers, although Charlie hasn't posted in a while ... He's a scientist, and he's from California.
Welcome Maggieroni, Sorry you need to join our group, however, as you have already found out everyone is very helpful. And there is always someone to listen, and give advice some welcome & some not, but know one means to be offensive. Just trying help with a very difficult, stressful disease. I am no help with sundowning, I have not experienced that symptom yet. My husband is 58 years old with FTD.
Thanks Kadee. This may sound a little insensitive but as my hubbie is 80 I hope that I won't have to live with this for too long. I know they can live a very long time with AD but even if he lives to 90 I hope I can cope with 10 years more of this. To those of you who have husbands or wives who are so young, in their 50's the path may be very long. I've only been dealing with this about 2 years and I'm so stressed all the time. The new (as of Dec. 1st) live-in caregiver/companion is helping to a great degree but I live in fear that Jerry will act out in a way †hat makes poor Jacques (he's French) not want to stay. I pray for all of us.
Welcome to you Maggie, You'll find help and support here. Many of us feel the same way about hoping/praying that we'll be able to cope for the duration of Alzheimer's.
Frustratedspouse has also started a new thread to introduce herself ... she and her husband are even younger than Kim and her husband, and also have two children. The thread is:
Welcome Frustratedspouse, I am so sorry you are dealing with this dreadful disease at such young age. My husband is 58 years old with FTD, he started having memory problems at age 52. I am sure you will find everyone kind, helpful & non-judgemental. I feel this board was a godsend to me.
Welomes to Maggie, Kim and Fustrated!! glad you found your way into our friendly group. Some of us are ole timers into AD now for more yrs than you need to hear, and some are new like yourselves and many inbetweens. there are many who read and never reply but find help and support just reading and not feeling alone. caregiving for AD is quite exhausting and you must be stockpiled on patience and endurance. There will always be someone here who can offer workable handson advice and support. Divvi
Annie22 just posted under " Telling my spouse that he is moving to a supported living facility". She lost her husband in October, and will be alone for the holidays.
A confession from Zibby: I'm not new; came at Joan's invitation several months ago from the another board. Used the name Jane L., but forgot that and my password (I have a severe case of caregiver's dementia) and after being "rejected" because even the notes I'd made earlier didn't work. So, I just started all over again as Zibby. Should have clarified this when I "re-enrolled." This site is wonderful! Thanks to all who research questions and share experiences and suggestions.
and I would add, you're never more than 10-15 minutes away from a response from one of us, except maybe in the dead of night. The AZ board on About.com is in slow motion... maybe after two weeks you'll get a reply, but not here! Welcome to you all!
Hello everyone. I have been reading the boards for some time, and have decided to jump into the pool. My name is Diane, and my husband Dave has AD stage 5+ (whatever that means). I am so greatful for this website. My friends never want to talk about AD and what I'm dealing with on a daily basis. If I hear "be glad you're so strong" 1 more time, I may explode! The fact is, I'm NOT so strong, and my own meltdowns are becomming far to frequent for comfort. Anyway, thank you all for being here, you have no idea how much reading these threads has helped. Thanks for listening! ~Diane
Thanks Kadee and bluedaze. I don't want to start off on the wrong foot, but I have 2 dogs, A Boston Terrier (or Boston Terrorist, depending on the day) named Ozzy, and an Am Staff (Pit) name Tasha. But I'll get a cat if it will help :)
Diane V and all the other new members welcome. So many anymore I can't keep track. You will find posting will help you more than just lurking and you will be helping us at the same time. I about live on this site. Hope to hear a lot from you newbies.
Welcome to all new members! Diane, there is a dog discussion here too! There are a lot of us with dogs and no cats, as well as those who have both dogs and cats...and those cat lovers who don't have dogs! While we have had cats most of our lives, right now we just have two dogs - a white lab and a German Shepherd.
Hello to all--I'm just getting a feel for what this website is like, and I probably posted my story under the wrong thread. (It's under "What Your Life Was Like Before Dementia" or something close to that.) Anyhow, I have a burning question--what does DH stand for????????????????? I"m not usually dense, and intially, I thought it was divorced husband--but there were too many. Is it "dear husband"? I've been reading the posts for a few days now, and have already picked up a couple of new ideas! Kudos to all of you for sharing your hard-earned knowledge.
Okay, you caught me. I did sneak in, but I've been lurking forever and have learned so much. I feel I know the "regulars" well. It's a great place to hang out.
Marsh, I learned from you that sleeping nude actually makes you feel warmer than when wearing night clothes. Thanks for that tip. Starling, you saved my life with a comment about symptoms of hypothyroidism being similar to those of AD. Turns out I'm not demented yet - at least not very. Sunshyne, you posted something about the AD brain not being able to properly utilize glucose. I believe it was in the section on coconut oil, but I haven't been able to locate it. I wanted to pass it on to a friend. I've gotta believe that ties in to sweet tooth so many AD patients develop, perhaps the body's way of trying to get more glucose to the brain. I wonder if this connection has been researched?
I have cats and dogs, a few of each. They do make life interesting.
To Maggieroni, folly, and anyone else I have missed - Welcome to my website. Sometimes people manage to fly in under my radar, and I just don't find them for awhile. If this has happened to anyone, my apologies.
This is a place of comfort and support for spouses, as only another spouse can understand what we struggle with when out husbands or wives have Alzheimer's Disease. I encourage all of you to log onto the home page - www.thealzheimerspouse.com, and look at all of the resources on the left hand side. Chances are good that whatever questions you have and whatever you are looking for, you will find there. I especially recommend the Newly Diagnosed/New to this Website section, the EOAD section for younger members, and Understanding the Dementia Experience. Also, be sure to scroll through the Previous Blog section, as I can almost guarantee if there is an emotion you have experienced, I have written about it.
Please be sure to check into the home page every day for daily news updates and information, daily blogs, and other surprises. Also, check out Joan's Marketplace. I design new items almost every day, and any purchase you make helps keep this website up and running.
You can go to the top of the page and do a "search" on any subject. If you don't find it in "topics", try it in "comments".
Welcome IKincaid, I am sorry for your need to join this group, however, I am sure you will find everyone kind, helpful & non-judgmental. My husband is 58 years old, he has FTD. Others, will be along soon to welcome you also.