I'm generally really positive, I can cope with and deal with almost anything. Even the impossible sometimes, in this horrendous journey....My partner is only 51yrs, I'm only 42 yrs...He's been ill for three years now, and although on Aricept and Ebixa, he has started to decline. I have a 15yrs daughter who finds this hard (We all find it hard, but she I fear is at a vulnerable age)
I'm strong for her and give her much time....I find it's me who is the lonely one. My daughter enjoys an active social life with her school friends, but I'm the strong and organised one for everyone and everything. It all becomes just too much as I really need a break. No break happens....
Does anyone else find this..?
Just today, my partner (We lived together the last 8 yrs) bought the newspaper twice within an hour...he forget's what he's done... He bought two expensive speaker systems from AMAZON...he forgot he bought the first one, so a couple hours later he bought another...
I'm paying for all of this as he cannot work due to AD.
What do you folks do...?? Some days he seems fine, other days, he's completely not here....and he has mood swings, sleep walking, gets abusive and aggressive when he can't remember things.....It's like living a nightmare..
I'm in the British Isles so I'm due for sleep soon as it's late.....I'll be checking in on this sire tomorrow....I hope to make some friends on here. This illness makes for very lonely spouses.....as even when my partner is 'here' he is somehow in another world. It's very sad.
I thought I was strong, but I'm beginning to worry I'm not strong enough..
Lynne welcome to our family. We do have other members from your side of the pond. I' m sure the other youngsters from our group will be along to welcome you.
Lynne ((((((hugs)))))) Welcome to our family. I am 56 and my husband is 61, so we are not as young as you and your partner. But there are ones here your age bracket and younger. This horrendous disease is no respecter of age.
We all feel the way you do - lonely. Even if they are still functioning fine for the most part, the relationship, conversations, etc have changed or are gone. What do we do?? Stay connected to this site. Many have joined facebook and share there - just fun things, some AD stuff, but mostly more 'normal' life. We can also share pictures on there which I really enjoy.
I would suggest trying to close his Amazon, ebay, paypal, and any other accounts. Since he has no income of his own, then he should not be able to get them. If he is using credit/debit cards, take them away. This will probably cause a lot of anger, but you have to protect what assets you have. As you get time, read previous post and you will find women who have been devastated financially because their AD spouse's spending.
What medications does he take? Sounds like he needs meds for the anger and aggression, or if on an adjustment.
HI Lynne, Welcome. My husband is 59 and I am 54 but our kids are in their 20's....So hard for a 15 year old and for You. When charges started showing up that my husband didn't remember, I had a discussion with him about what he had done and he agreed to give up the credit cards. It was a difficult thing to do because I felt like I was taking away his independence and treating him like a child. However, the alternative is financial disaster. I am sorry that you and your daughter have to go through this. I think we all understand the constant loneliness of AD and here you will find enormous caring, support and empathy. I agree with Charlotte that it seems time for an evaluation for anti aggression meds. {{{{{{{{{{{{{{hugs}}}}}}}}}}}}...Sue
Lynne, welcome to our forum family. I am glad you found your way to Joan's place. I am 42 also, but my husband Lynn, is much older. We have been married for 24 years, he was my everything. He is now is stage 7, and has been in a nursing home since Feb. My young niece and nephew live with us and it was indeed devastating for them to witness the declines. They are now 11 and 13, and seem to have a much better handle on it than I do! He is still, simply uncle Lynn to them. They can still see him, not just the disease. Amazes me how children cope and adjust!
You will find we are all of different ages, our spouses in different stages, but we are all going through the same emotional loss. Here you will meet people who understand and will offer you unconditional support. Keep posting ((Lynne)) it helps to know you are no longer alone. ((hugs))
Thank you all, SusanB, Charlotte and Bludaze for your replies...
He's on meds for the aggression, but it doesn't totally control it....he's on 'seroquel' (I've no idea of the medical term for this drug....and he's also on zispin, which are anti-depressants. The AD meds he takes are Aricept and Ebixa....I'm not sure of alternative names for these drugs... Or if the names are different in the USA.
I've already taken him off out joint bank account, and set him up his own bank account....I put around the equivalent of $2,000 per month in the account for him and he spends it madly....He's always overdrawn and I don't know what to do. He doesn't work, so he relies on my income. He pays no family nor household bills, I take care of all of that.
He buys things, and then forget's he's bought it..OR worse, be buys an item. loses it and buys it again, OR, he buys it, and it arrives, and he says it's broken, even though it isn't, it's actually him who can't use it due to his illness, so he buys it all over again.....It is a complete financial drain....And if I challenge him, even gently and discreetly, it's my fault and I'm wrong....This is so frustrating and I don't know the best way to handle it....
Thank you again for your support so far.....I'm on facebook too.....
Welcome :Lynne! how sad you are too young to deal with this as is your partner. the good thing is you found this site and there are several younger spouses here caring for EOAD. i agree you should cut his allowance to what you feel you can lose each month on his buying. in my opnion thats alot for an AD person to just poof off each month without supervision. you can access his acct and remove his credit card on file for amazon. and i would also take the mout of his wallet if he carries any. except an ID and some cash. having a 15yr old is hard with AD asyou will see many here have smaller kids still at home as well. there are all walks of ages here some early stages some end stages. we all share and come together to relieve our stress and burdens while caregivers and offering advice and support for anyone who needs it. hope you find new friends and help along the way. divvi
Hi Lynn & Welcome, I am so sorry you have a need to join this family, however, I am glad you have found somewhere to come when things seem so low. My husband is 58 years old, he suffers from Frontal Temporal Dementia (FTD) not Alzheimer's, however, same outcome. I went through exactly what you are a couple years ago, my husband was like a 12 year old, had money & wanted to spend it all. I also, obliged him feeling sorry for what he was going through. I finally decided, if I didn't put a stop to it, we would be bankrupt. There has been spouses on this board, who have found out too late how much the spouses have charged to credit cards. Please feel free to post at anytime.
Search these boards. It's amazing how so many of us have "lost" credit cards, had the bank inexplicably change our account numbers, etc, etc. Remember, that "therapeutic fibbing" is allowable. That the "reason button is broken."
Read particularly through the thread about "what I wish I'd known in Stage Three or Four". It's none of it easy, whatever age, but it is better to be prepared. And to protect your assets. You'll need 'em!
Lynne I noticed your husband is taking Aricept. Quite a few of us have found that it makes people with FTD (frontal-temporal dementia) much more aggressive, do you have a specific diagnosis?
Welcome to the site and to friendship; I know you'll find many bits of information that will be helpful. My hb never managed $ well, and with his vascular dementia, it's worse. His name is off accounts, he has no credit or debit cards because he spent $ of stuff and didn't know what he'd spent it on--mostly work-at-home scams, I think. He still answers junk mail. I've listed him on many do-not-mail lists, but have been told if he responds to an ad, they can send stuff. Anyway, I *think* the $ is more under control now. I'd advise closing his account and giving him a small *allowance* that he can save or spend as he chooses. At the moment that's working for us. I think he saves it and then sends cash to scams because I found an envelope with $60 in it, which I took. Tore up the envelope, and doled the $ back to him. He's probably still waiting for his "big winnings" to arrive. I took him to the bank once (small town, small bank, people know us), and banker explained about scams. Worked for awhile. I don't give him stamps; so he has to purchase those himself. (((hugs))) to you and your daughter.
Charlotte, tried to add you on Facebook but can't find you...My email address is lynne8@manx.net Name Lynne Morgan if you want to find me and add me on there... I have quite a few friends on there, but only my closest friends know that HB has AD. I try to use Facebook to be positive and to arrange fun times with my girlfriends....It's so hard living with an AD sufferer....as sadly I'm sure you know...
Welcome to this site. My husband has FTD. He is 59 and I am 50. I'm sorry about your daughter having to go through this so young. It's hard for them. Our children are 27 and 22 and they have not had to be around it 24/7 and still have had some difficulties with what is happening to their dad.
I'm also on Facebook. You might what to join the azspouse group on Facebook. You need to be approved to join by (briegull) Clare.
Lynn, I have found you on FB (beautiful picture!) and invited you to be my friend. So sorry to hear about the hard time you're having. But you have come to the right place. We are older (66) but I am on your side of the pond. I am from Ohio, but married a Dutchman and live in Holland. We live in a village near Rotterdam. Welcome to this website. Have you read Joan's blogs (Previous Blogs) on www.alzheimerspouse.com? That's a good place to start. My email address is on my account; feel free to mail. And to come visit if you're on my side of the channel. Jeanette
I've confirmed friends with Charlotte, Jeanette and Karen Klok... (I assume Karen is from this AD support site)
Jeanette, we will be visiting Holland and Germany later this year on a search for a new dressage horse. My daughter rides and competes at a high level...we both ride dressage, but I'm not competitive like Kate.
I've sent you a message on facebook. It will be good to keep in touch and get to know you on there. I use Facebook daily as it's a good way fro me to keep in touch with friends and have some light hearted relief away from the strains of AD. I've searched of many old colleagues, old school friends and made new friends....I have lots of friends and I'm really thankful for that.
Deb, you are so young too...It's hard to come to terms with I feel. I didn't realise AD could affect such young people.
I'm looking for you and FB and will try to add you this morning... Lynne
I just sent you a friend request on Facebook. I'm 54 and my husband is 64 and our children are 19 and 16. Our 16 year old daughter is at boarding school during the year so she doesn't have to face as much, but she has been home for the summer and wonderfully helpful to me as I deal with the stress of renovating a home to move to (which my husband refuses to be involved with). My daughter says she knows how to support me but not how to support her father, and that seems to be a good compromise.
my husband and i are 56 he was diagnosed in feb this year but i would guess hes had this much longer he had a couple of closed head injuries and the dr figures thats what triggered it its been tough but its also early for us like you sometimes he will be so there and most time he is here but not, he loves to buy but cant remember the account #s so i have to ok it i have an 11 yrold and 8yr old grandchildren that live next door they actually handle it better than my son their father he was especially close to husband and cant stand the decline he has had memory problems for about 10 yrs but didnt think about it til he started having problems at work he will start dissability in sept i too am in facebook name linda lank tripp my other son almost 34 is dealing with his father pretty well he and his friend live with us
Pam, I confirmed you as a friend and sent you a message on face book. We are renovating our home at the moment too...and I have to do all of the running around as Ian simply cannot manage it any more. He can no longer work and I run our business to, so it all gets a bit much and on some occasions I long for someone to say 'I'll take over for a few hours so you can have a break'...Naturally, this never happens.
Kate is amazing and we regularly have 'girly' times, even if it's only for a couple of hours, and we'll go sopping together, or watch a movie. She's almost 16 and has a great social life with her friends....I know she'll be more independent as time passes, and I do worry about her leaving home. This is why I've made huge steps forward, re-connecting with old friends and making new friends. Friends are so important to me and I'm blessed I have so many lovely, reliable and gorgeous friends.
Linda, I'll look you up on facebook in a few minutes...
I am 55 years old and I find the decline of the sexual relationship very hard. I think no matter what age you are no one is prepared for this disease. The younger you are the more you find yourself in shock having to deal with these issues that you thought only happened to people in their 70's or 80's. You find yourself dealing with things that you thought were end of life issues that you would face much later in life's journey rather than now. You feel cheated by this disease, that what you wanted to be doing now in your life, you have to give up to deal with the care of your spouse. I was in my prime in earning years of my career. I left my career which required alot of travel to be home with my wife and care for her. I want to be with her while she is in the early stage and enjoy the time we have.
I know that as we continue on this journey, we find this site a great resource.
I think the key is to keep focused on today, and be thankful for what we have and not focused on what we have lost.
Welcome Lynne, sorry you had to search us out, but so glad you landed here! You will as you can already tell, find yourself among a warm, loving, supportive family. I am 53, my husband has FTD and is 62. He is in stage 5 of 6. We thought we had our whole live ahead of us, but it was not to be. It is tough, because while friends are active we are at home. Jim is now in the hospital awaiting a NH placement. I'm raising two grandsons, (another "not planned for") and dealing with losing the love of my life. It's a journey, no one who hasn't walked the walk, can understand. Keep reading the different threads and post your questions. We ARE here for you. Arms around, Susan
I was shocked initially, about the young age at which Ian developed this disease... As you said, it's something we often think of as an older person's disease...
I miss the physical side of things too, especially hugs and affection. Especially when things all seem just too much to deal with. I'm looking forward to getting to know people on this web site ..
Bluedaze, they said he has AD with what they think are Lewy bodies. They can't tell us this 'Lewy Body' part for sure though. He sleep walks a lot, which is apparently a characteristic of Lewy Body dementia...
Welcome, Lynne. My husband was diagnosed with Alz about 14 months ago. He is 61, I am 59. You will receive lots of support and much information here. Glad you found this site.
My husband was dx with EOAD at 60, 4 years ago. I was 56 at the time, and we are the second generation in his family to go through this--his Dad's AD started in his 40's. Although it is a horrendous disease at ANY age, I think the younger it starts, the more challenges it presents: possibly still having children in the home, as you do; forced/disability retirement; stopping driving at a young age; less support because friends/family still work; greater financial impact due to loss of career early/health insurance early, support systems designed for older adults, I could go on and on! Frankly, if you weren't feeling overwhelmed at this point, I would say you were in denial! I am so glad you found this site and can benefit from the support and advice here. One thing--if you haven't contacted an elderlaw attorney yet, it is probably advisable. I'm sure the laws and gov't programs in your country are as difficult to navigate on one's own as our are here!
Hi Lynne, I am guessing from your email address that you live in the Isle of Man? I'm sorry you have a need for this site but I know you will find all the help and comfort you will need. I am originally from Liverpool but have lived in the US since 1964. My DH will 81 next month, I will be 70 in a couple of weeks. DH was dx'd in September 2007 and is supposedly in the mild stages. Welcome and I hope you have a good day.
Thank you Marilyn and Jean...yes I'm in the Isle of Man. I was born in Liverpool funnily enough. We also have a home in Yorkshire and divide our time between the two places.
I already took legal advice, as both our properties are in joint names, and we are not married...therefore I have power of attorney over all Ian's assets. I was advised to do this by Ian's brother in law (Ian's sister is also an AD sufferer) I was worried that if Ian deteriorates much more, he wouldn't be able to sign to allow the sale of property if I needed to move at some stage...
I do feel overwhelmed sometimes....Ian is having a particularly bad day today and is laid out on the sofa unable to do anything....I have to try and turn it into a positive and think 'well at least he's not spending a fortune on the internet.'
He keeps forgetting his Amazon log in details, so he's made two new accounts so far. He forgets his bank details all the time....so I have to keep a very close watch.
I don't know if this will help--but my experience is that Steve is easier to manage as the disease has progressed. Early on, he locked himself out of online banking 6 times, I had to keep fixing it, he was constantly "into things" (translate breaking things) in an attempt to help, insisted on doing our taxes, as he had always done (bad idea), you get the drift! It was pure hell! Now, as his functioning level is much lower, he lets me take care of everything completely, even seems relieved that he doesn't have to struggle with it. The whole trick is finding a way to (mentally) deal with the early stage when they are struggling to do what they have always done, but aren't able to handle it properly. If I had it to do over again, I think I would have tried medication myself to get me through that period.
Hi Lynne, I have, too, sent a Facebook request to you. I'm so sorry for your situation, but you will find support here........Sometimes there are tears, but often we laugh. What else can we do?
My husband is 62 and I am 52. He was diagnosed 2 years ago, but symtoms have been obvious for 8 years.
I was away last week, but did check in and see your posts. Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse 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.
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". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
Also, do a search at the top of the message boards for EOAD. There are at least a dozen discussions on that topic. I think you will find them informative and supportive.
Hello Lynne, and welcome. Your story reminded me of my husband buying women's size slippers twice on Ebay! The 1st pair he cut & put duct tape on, then the second, he gave to me. I had always bought his house shoes, a particular brand that fit him perfectly. There was no reason he would have to buy those others, especially when on Ebay you can ask the seller questions. (As in: are these women's or men's sizes.) My heart goes out to you. I can't imagine why he needs $2,000 per month. My h was constantly bouncing checks (no funds available.) Could you reduce the amount & only get for him what he needs? Does he have family? At some point, depending upon how quickly he progresses, you may have to make a choice as to what is best for you and especially for your daughter. Where in the British Isles? I've been to Jersey Channel Islands, off the coast of France. Of course London, etc. too.
Welcome, Lynne. My husband was diagnosed with AZ and possible LBD at age 62, but we noticed the symptoms quite a while before dx. I was 59 at the time. We've been through a good share of the experiences and he is now well into stage 6, possibly going for stage 7. It's a long, hard journey and this site is truly a life saver. Besides all the support, the knowledge one gains here cannot be had in any other place that I have found.
Hi Lynne-- I'm 47. My husband's symptoms started showing up in his mid-50s. He's now 61. Our kids are 17, 19, 20, 22. They deal with it pretty well, but they did the second half of their growing up understanding that they really only had one functional parent. I'm on FB as Emily Gillespie Clement.
My husband doesn't buy things much anymore, but he does carry a credit card for times like now--he is visiting his sister for the week, and we want him to be able to pay for some of the dinners out. I'm sure she is helping him with tipping and signing in the right place on the slip. Fortunately (in a way,) his ability to do anything meaningful with a computer departed early, so I don't run much risk that he'll buy anything online. Mostly I have to watch out for sales or charity solicitations coming by phone. At this point though, his motivation and initiative are so low that he isn't inclined to answer the phone if someone else is there, and he defers to me for most things.
Yes. Very, very lonely. The kids do have their busy lives and friends, as they should. I am fortunate to have family nearby, but I know that my solitary edge (I am a Rock, I am an Island...thanks Simon & Garfunkel!) is growing, and I don't entirely like the effect it has on my personality, but there's not much to be done about that.
I've been away from the boards the last couple of days, as Ian's had two good days, so we make the most of his days. Last weekend, he was really bad, and we couldn't do anything. He couldn't even remember where the oven was on Saturday (I'd asked him to help me out in the kitchen by taking the bread out of the oven) I found this really sad....and when these lapses into what I call 'vacant mode' occur, I sometimes feel really panicky about what is to come in the future.
He was truly dreadful until he started on the meds. I'm so thankful they've helped a lot. Now I'm on eggshells, waiting for any signs of decline. Sadly, the signs are here and it's very upsetting.
On the whole I'm strong though. I've always had to be and now that I find myself dealing with this, I'm glad I am a strong and organised person.
When he has good days, he seems almost like he used to be pre AD. I'll keep a monitor on finances and make sure I watch more closely what he spends. I don't mind him buying things if he needs them, but buying several of the same item is a bit much. I know he only does it as he forgets what he's bought.