Hi. I am new to this site and I am thrilled that finally I found a forum relating to spouses. My husband was diagnosed with early onset dementia 8 years ago at 53 years old. He is in a severe state now and becoming very difficult. He is 100% service connected disabled from the VA and they started to supply me with companions about 7 months ago to relieve me of some of the time with my husband. My husband is a Vietnam Vet diagnosed with PTSD and this gets much worse with thr progression of dementia. I have severe arthritis in both my hands that required surgery this last July (I am 59 years old). I am having a hard time managing him. He pushes me and is much stronger than I am yet the thought of him going to a nursing home makes me cry. We have been together for 40 years and even though he is not "here" he still exists in my home. I found the hardest part was trying to exist independent of him when we were so used to working as a "team". I miss his intellect. I miss the fact that he "lived for today" and I am the serious one. Thank God for all the trips he planned-even when we couldn't afford them- because at least I have good memories of him. This is a time when we had planned to be retired living well. We have a 24 year old daughter that spent most of her teen years dealing with this insidious disease. If only she could remember what I do. If only she knew that she was his pride and joy. For the ten years before the diagnoses, he lived with a dying mother, a sister that he adored who faught breast cancer before dying at age 49 and he drank to numb the pain. All my daughter remembers is the alcoholism and sickness and death that surronded our lives before he was diagnosed with dementia. She shys away from him and now that she graduated from college and lives on her own, she rarely sees us. She hated his alcoholism and blamed me for staying with him. I feel she was cheated. I have become Genes wife and caregiver but I have lost sight of who I am. People say to me "you'll have time to do things for yourself" when he goes into a nursing home but honestly, I don't know what I would do with myself. I need to find out who I am and I had hoped by age 59 I would have already known. It's lonely. I miss my husband and every day I pray for a miracle to reverse this disease all the time knowing that this will probably never happen to help him. How do the rest of you cope? I see and hear what other people complain about and I think "if you only knew what was really important in life". I just shake my head in silence.
Hi & Welcome eugene 0401, I am sorry for your need to join our family, however, I am glad you found us. I am sure you will find everyone kind, helpful and non-judgemental. I am sorry your daughter is having problems dealing with this dreadful disease, however, I can understand how she feels, I too lived with family alcoholism, I can still remember the times when holidays were ruined. Hopefully, she will come around in time. My husband is 58 years old & has FTD. One of the worse parts for me is feeling lonely, my husband can no longer carry on a conversation, I really miss bouncing ideas off him, or just discussing a T.V. program.
Welcome eugene0401. You have found a wonderful site. We're all friends and you can say anything you want to. There will always be someone to answer you. My DH and I are older than you but still hate this horrible disease. It's very hard to have a husband in name only. Yes, all those memories of trips are wonderful. I'm so glad we did so many things. We've been married 20 years. (second time around) The others will be along soon to greet you.
Welcome eugene. Yes-you have lost part of yourself putting your husband's needs first. I hope you can get your daughter back. You will come to understand that dementia is a terminal disease and you don't have to die with it. We're here to hold your hand or be screamed at. You're with friends now.
Finding out 'who your are' will take time. You have spent your life being someones daughter, sister, niece, wife, mother, etc. but not you. If you don't, I would encourage you to journal about your thoughts and dreams. Try to think back to younger years dreams you had of doing or career you wanted. What things did you like to do that you don't do now or would like to try? As you write your feelings, thoughts, anger, dreams, etc. you will start to find who 'you' are.
My sister, after a year, is still trying to find a future. She spent years being caretaker of our mom, then her husband. She was always the nurturing one in our family - the one us younger one went to and looked up to. It is hard- very hard. Maybe more so after so many years of being a wife and now caretaker.
Most important - take time for you. Whether it be on this website, reading books, playing online games (pogo is my escape and enjoyment), knitting, crafts, whatever. Do it and it will help you build for the future.
And remember that what is horrible for one is not to someone else. Example: My sister and many on here do 'poop' duty and all the care for their LO. For many it is nothing (I don't mean to minimize but couldn't think of better word), but for me it is something I dread. Years ago I worked in a hospital as a nurse's aide. That was part of the job that I occasionally had to do, (I actually did more medical/emotional care due to working nights) and I detested but you have to act like you don't mind to the patient. We are all different and react different. But I am certain there are many that can identify with where you are and how you feel.
eugene0401: Welcome and glad you found us, although sorry for the reason. My DH was diagnosed with EOAD at age 53 also, and he will be 57 next month. (Actually, Kadee, the neurologists describe my DH as having either a very wierd form of AD, or a very wierd form of FTD, because he seems to have @ 1/2 the sypmtoms of each!) My 21 year old has good memories of her father and our family, but I worry that my 18 year old, who still lives at home and will graduate from high school in May, just remembers dad getting wierd. LIke your husband, however, even though my husband was a "workalcoholic," not the kind you had to deal with, he also believed in splurging on vacations, and both girls and I are thankful for that because those are really our happiest memories. Mostly, as everyone on this site says, I just miss my husband that I married, because even though my DH is probably middle stage, the husband I knew is long gone.
Hi eugene0401 & welcome. I am 59. My husband has another form of dementia & is still functional. I understand the loneliness part, I feel it too.....where did HE go? But the part of your post that drew my attention was that is that he pushes you & is much stronger than you are. You are having difficulty managing him. We have people on this site who swore they would never "place" their spouse out of love & duty, but when push comes to shove (no pun intended) they do end up with sorrow in their hearts placing their spouses in nursing homes or other facilities. There will come a point that if his aggression cannot be managed with medication (have you tried that?) that you will have no other choice for safety's sake. One of you has to live, and he will not. It has to be you. You need to survive this.
We will hold your hand through anything you go through.
Hi eugene 0401, EDIT - 3/9/09 - Did eugene change her screen name to Kathryn?
Welcome to my website. Because we are all spouses, we understand your emotions as no one else can. You have come to a place of support, information, and caring. Please log onto the home page - www.thealzheimerspouse.com - and look at all of the resources on the left side. Since your husband falls into the EOAD (early onset) category, click that section to read about others struggling with EOAD. "Newly Diagnosed/New to this website", "Understanding the Dementia Experience" are excellent resources. When you get a chance, scroll through the "previous blog" section. I guarantee you will relate to many of the topics. There are quite a few on loneliness and missing our spouses. The older ones take a long time to load, but be patient, and they will load.
FAyeBAy - approach with this: we need to get you in the system so when you do need medical help later on, it will be quicker to get in. That is the truth. It can (not always as jim's wife found) take a long time for the initial setup - depending on where you live.
Eugene...Do you know what I noticed that connects US? ... I notice your sign on name is actually HIS name.
In my case, our email address, all bills, memberships, etc. are in DH's name first or even singularly. They call him the "Primary". Even though I personally set up the accounts!!!!! I read so many notes on this wonderful site about how important is is to get these changed when they are still "around"... if possible. Later, some accounts might want you to requalify or re-subscribe to get the service/card/etc. in your name.
I even PUT his name on the utility accounts after he was diagnosed and we moved. It was the way we did things, right? I learn something new every day from this wonderful group of people.
I am so sorry you have had such a horrible experience. Where do you go to the VA?
Our experience has been the opposite. My hb has been nothing but treated really good from the time in 2006 when he almost cut his finger off to now. My FIL who never used the VA until my MIL died has been treated really good too.
I will say my son has had the problems. He was in the Marine Corp and injured his back. He is still in pain but when they do MRI's they say nothing shows up. When he was discharged something did show up and that is how he got 20%. But, they also say it may not show up due to the weight he has put on. He also has been diagnosed PTSD, which I knew. He finally has faced it - course the only chance he has to increase disability is to go to counseling which he is. I am so glad he is before it cost him another marriage and kids.
Dear Eugene 0401. I know how lonely you are. This is Sunday. We went to church and Sunday School and a friend drove us home. I fixed DH a bite to eat. He took a nap. At 5 o'clock I fixed dinner. We ate. He said it was a good supper. It is now 11:30 and he's gone to bed. And, I'm here writing to all my friends. It's the first conversation I've had all day.
He's very sweet and affectionate. Asks me if he's been a good boy today or if I'm going to have to give him a spanking. He told me many times he got a spanking every day of his life until he was 12 years old. I knew his folks and they just spoke of what a good goy he was.
In his mind, I think he's about 5 or 6 years old. I' lonesome. I'd like some real good adult conversation--maybe about philosophy or current events--or just a movie. I'll settle for just about anything now.
welcome eugene 0401. the loneliness is terrible. i know what you mean. it's sunday and i've spent the day helping dh out of the floor time after time after time... it's one of those days that i just want to give up on both of us.my head hurts, my neck hurts,my back hurts,i can't go to sleep,but i am worn out,and tomorrow is another day. jav
welcome eugene 1401, i`m relativey new here to and cannot say how much this new family means to me, they let me vent and tell things like i need to, so feel at ease to say what you want, no one will judge you for how you feel, we are all in the same boat, I`m sorry you need to use this site but happy you found it
Dear Eugene 1401.....I, too, know loneliness. I'm okay with "alone"....I can find things I need to do and am pretty self-sufficent. Always have been. It's hard to do though, when depression sets in because of your situation, but being around other people, like going to church, helps me, even if I don't interact very much with them. My husband is in a nursing home in Florida...I'm in Virginia...long story. I'm leaving tomorrow to visit with him to see first hand what his situation really is, how far he's gone. I'm frightened. I have fantasies of bringing him home at least until I can find a proper placement for him if necessary. He's "here" one minute and "gone" the next when I'm talking to him on the phone. When he was here with me, he just sat and stared or was abusive verbally. Never could get him up and going to do anything. And fought like mad to get him clean. I understand what you mean by missing the man you married. I've vowed I'd never divorce again. Would rather end up a widow. Might seem selfish, but I don't want to loose my farm. My hope and dream of a lifetime. I get so tired from the depression and loneliness I just want to lie down all day. He still knows who I am, but thinks I just live down the street from where he is. I, too, fell in love with my husband because of his intellect....and his adventurous spirit. Come here often and read other's comments. Even if you have none to offer of your own at the moment. Just reading is a tremendous source of encouragement.
Mawzy, I literally log "human contact" and most days I don't have any except for this forum and the one I go to for "normal eating". I log if I said hello to the cashiers at WAWA when we pick up my husband's newspapers every morning. We are still doing that although I'm not at all sure he still can read them. He enjoys buying them and there isn't a whole lot he enjoys these days.
I have phone phobia. I wasn't allowed to use the phone as a child or a teenager because of the expense, so I never learned how to use one for anything but work. I can pick it up for anything business related, but even that is hard. I love it when someone calls me, but I literally forget the phone is even there when I could call someone else. My daughter and my best friend (who now lives thousands of miles away) both understand. But if I call out, or someone calls me, I log that as human contact as well.
Dear Eugene0401, welcome; this is a very informative site with very caring members. My DH was diagnosed with aggressive FTD last year (58) and he has been physically combative for several months until they got him on the correct medications. Like you, I have severe arthritis (hands, kness, hips, etc) and friends and family were very concerned about my safety because I cannot defend myself against him and cannot move fast enough to run away. Ufortunately we had a horrible incident which landed him in a psychiatric hospital via jail. During his stay (3 months) in the hospital, I cried every day and all the professionals told me to get used to being alone since he was too usafe for me to care for at home. Once they got him on the right med combination, I was able to bring him home again, but have a live-in aide in case he has a relapse. Try to get your DH to a doctor to prescribe medication to hel control his aggression. My thoughts and prayers are with you. You are not alone.
Things I like about being alone: being able to find things, leaving dirty dishes in the sink, having chocolate for breakfast, clean countertops, toilet seat down, not having to worry about a visit from the police, enjoying a glass of wine in the evening, not having the TV on, two cats sleeping on my bed, being in total control of finances and knowing all bills are paid. Isn't the way I wanted life to be-but------
Eugene0401, I know that you feel very alone, but you are not alone. Not only do you have us!!!! there are many resources that you can avail when the companions come to sit with your DH. First your community should have a senior center. It is not for cards and shuffleboards anymore. There are numerous classes and groups and travel clubs, exercise clubs etc. Most cities have lower the age to join to 55 so you would be included and probably be able to establish friendships with other women your age. Also most churches have groups that go to lunch and on little side trips, again you are in the right age groups. Lastly I would encourage to seek out ALANON. They offer support for spouses and family members of alcholics.. You might find alot of support there. Welcome to the group! you will find that you can be candid and honest here and no one will judge you for what you feel or say. Phyllis
Eugene0401 - welcome to the group. There is being lonely and then there is being alone. For loneliness, you need to make human contact. Several of the above suggestions are very good to help with that. Do you have a hobby that you can pursue? How about a new hobby to start? Can you join some kind of exercise program that won't be too hard with the arthritis? Getting physically active goes a long way to helping with the depression.
There are lots of discussions on this board on placement versus keeping the person at home. Included in those discussions are they why's of it and many of the feelings that go with it. The best part of this board is that you will find you are not alone in many of the things that you are thinking and feeling. There is also lots of information available from financial to medical to making the home safer for them.
Things I enjoy "being alone, meaning dh is here physically". I enjoy having my own room with my own TV, computer and adjustable bed. I enjoy going out to eat once daily and not cooking much., I enjoy being able to make my own decisions on most things. I enjoy the fact that both of use are still on our feet. I enjoy the fact that I don't have AD.
Things I don't enjoy. I don't enjoy having nobody to have a conversation with. I don't enjoy not having company. I don't enjoy thinking about what may be in the future. I don't enjoy walking with dh 10 paces behind, if he can even follow at all. I don't enjoy worrying about him when we are out in public. I don't enjoy being a caregiver but glad I am still able to do it but I wouldn't want to do it again. I don't enjoy thinking about "What if I should die first?"
StuntGirl, I'm glad you're taking the trip to see your husband - it may answer a lot of questions. Good for you for having the courage. Will be thinking of you all the way and wishing you the best of Irish luck (well, St. Patrick Day is coming up!).
I complained last week of having to entertain family coming to visit over the weekend.
we had long talks about what i will do 'after'. and were relieved i had some ideas-they are concerned with me being the caregiver but did say they thought i had a handle on it and doing a very good job considering the circumstances. and that DH looked much better than before and well cared for and happy. (thank you very much. validation needed) my brother says when the time comes he will be there to help me get thru all the estates turmoil which was reassurring to know that. plus he has several new businesses and will be moving to buy a second home in houston soon. we agreed that will be my place of landing after all is said and done most likely.
well they just left and i feel like its a mauseleum again. lonely and sad and didnt realize how i was starved for normal interaction and conversation- it comes so few and far inbetween we become accustomed to living an empty lonesome life -until we engage life again and it all comes back the loss and how much our lives change with this disease. divvi
I am much younger than you (I won't be 59 for another month!) and I've only been dealing with AD for a few years, but I can certainly relate to the need to figure out who I am. AD has sure thrown a monkey wrench into my plans...
Somebody here (ah, it was Starling) talked about Barbara Sher, and I found a book by her, called "Wishcraft", which you can download for free:
http://www.wishcraft.com/
It helps you decide what you want and how to go after it. It looks really good ... I just haven't gotten past the first exercise yet, although I really enjoyed that. Too busy trying to learn all about AD and everything related to it.
I found Wishcraft years ago. I literally moved my copy cross country 5 times. Other books came and went. That one was a keeper.
Personally, at this point in my life, real goalsetting doesn't seem to work.
By the way, I've also become a real Martha Beck fan. I got stuff out of her FINDING YOUR NORTH STAR where my reaction was "Where did that come from???" I'm working my way through her THE FOUR-DAY WIN which is about getting control over your eating and your weight from the point of view of a former binge eater who no longer can diet.
THANK SCIENCE FOR PROZAC AND CYMBALTA!!!! I'm preparing for this three day trip to West Palm to see John in the nursing home and this afternoon I get several calls from him. Not wanting me to come at all. Insists that I cancel my flight, (but still thinks I can 'drop in' to check on him later today). Accussing me of having lovers, that he doesn't want me to look at him. *sigh* I didn't even TWITCH! I've come a long way. Not reduced to tears and tranquilizers for a long sleep to deal with it all .....this time. A few minutes ago I got another call from him....apologizing for the way he talked to me and begging me to come see him. Wants to talk about the past times but gets frightened because he doesn't remember some things. Says there are "holes" in his memory. Attests that he is in love with me all over again. WOW. Some days are good, I guess. I'm so worried about what all I'll discover when I see him. He says he can't play Scrabble or Monopoly anymore. I will do what I can. I think that you are ALL so courageous. So scared.....what's next step. By the way.....my attourney isn't ever available when I need simple answers. How would I go about finding out if "the family" there has had him declared legally incompetent? Wills, POA, beneficiary to his Annuity and IRA have been changed. Anyone have any experience with this stuff? I'm tired of legal battles and only want to help make his life less difficult and worrisome. He needs someone around to give him TLC. Jen
Also, I'm so grateful for this group!!!!!! Question to administration.......can I give out the address of this site to the local senior day care (where I plan for John to attend at least three times a week)? It would really help if I could meet up with some others in my area and develop a more local face to face support group that could meet weekly....like our own sort of AA group!
Kathryn, if your husband is pushing you, you need to watch out for your safety. A nursing home doesn't mean that you can't be with him. Just the opposite, you can SAFELY be with him. I have every intention of spending as much time as possible with Jim when that time comes for us. Please be safe!
I am not sure what happened here, but there are two discussions with the same name, and they seem to be a continuation of the same one. I am going to transfer the newer ones to this original discussion and delete the duplicate.
CommentAuthorKathryn CommentTime5 hours ago edit delete Thank you all for your wonderful words of support. It is so comforting to read all of your notes. My husband spent 12 days in January in a psych unit getting his meds adjusted because he was having behavioral problems. It was the worse experience of my life. He was not showered or shaven for 11 days!! If the patients have no family to visit, they are placed in hospital gowns with diapers and strapped into wheelchairs with alarms. My husband walked every day for hours with a companion before he entered this facility. He needs total assistance feeding, toileting, and dressing. He still knew when he had to go to the bathroom-just needed assistance. Upon his discharge, he is not walking well, has had a visual loss, lost a tremendous amount of weight (because he had his food tray left in front of him without assistance!!). No matter how much I advocated for him, my words fell on deaf ears. I have filed complaints with the care center and am going to send my letter to our State Attorny General and directly to the doctor. My husband is no longer continent. All of this bad experience makes me very leary of nursing homes but mostly, It broke my heart to see him being treated so badly. This was a vetern who spent 28 years as a fireman. He helped everyone and the lack of dignity and respect paid to him was unbearable. Everyone loved Gene. I always promised him I would get him the best care I could and this certainly was not it. I want my husband back so he could have yelled at them all!!!!! I don't always want to be the "strong" one. There are many days I'm not. I look at him and know that he realizes what is happening to him. He cries. This was not like him. We cry together and all I can say is"every thing will be ok" even though I know right now it seems like NOTHING IS OK!!!!! Help. I need someone to cry on.
Jim's wife CommentTime1 hour ago OH Kathryn my heart breaks for you both. You are doing the right things. You said he was a veteran, have you accessed the VA System? We have just begun, but every facility we have seen, hospital, clinic and nursing home have been wonderful. Please check into this, it is ususally all free of charge! Boy do I know what you mean about not wanting to be the strong one. Jim is still able to help, but he doesn't unless I coax or repeatedly ask. And you are right, nothing is ok and it never will be again. You can cry on my shoulder any time. I understand.
Kathryn CommentTime41 minutes ago Thanks. I first went to the VA 2 years ago April and applied for disability. It took a year but he was granted a 100% service connected disability PTSD with symptoms of dementia. This has changed everything for us. They have been phenominal and very responsive. I wish I had gone sooner but he never wanted to go to the VA. He was treated for 10 years privately for PTSD. They are supplying me with companions for 6 days a week now (as of today) and they will pay for lnog term care in a nursing home about 1/2 hr away. I checked out the home and so far, so good. They told me they had a waiting list but after I applied, they called to tell me they got the application and then 3 hrs later said that they might have an opening in a few weeks!! I was not prepared for that!! I thought I would have more time. I've been crying and trying to deal with this since last Thursday. I know I have to do what is right for him. I keep thinking about how empty my days will be. We've been together nearly 40 years. That's a long time to "let go " so quickly. It has been such a long goodbye for the last 8 years but you do things one day at a time and try not to think too much about tomorrow. Now I am forced to do it. I know I'll be ok now that I found this wonderful website yesterday. It has been everything I have needed for so long. Thanks to you all.
You all please pray for me.....I'll be seeing my husband in the nursing home in FL for the first time in a year, this evening. On my way. Goodbye until Friday, unless there's internet connection at my little motel.
On your "talking" to your lawyer question. Does the lawyer do e-mail? Mine is difficult to get a hold of to talk to but is excellent about answering e-mails. At least with an e-mail, I have an electronic paper trail that I can keep to refer back to.