Lorrie....I feel your pain....my husband is 66 and 61 ... but I don't feel like our life is over ... it is just moving in a different direction than we had planned....we are enjoying our time together as much as possible...travelling and we love to go to the movies....I feel sure that this will change before too long but for now we will go and go as long as possible. I am my dh's lifeline at the moment...his voice...his caretaker and when I made that vow 43 years ago...I meant it but that does not mean that I'm not afraid of what the future could hold for us. I watched my sister take care of her husband of 36 years as he died of cancer and I can only hope to be as good a caretaker as she was...am I frustrated with him at times - you bet especially when I "forget" that he can't help what's going on....do I grow impatient when I show him for the 50th time where the seatbelt is in my car...you bet....I had to catch myself 2 weeks ago ..when I got home from work and he had taken down all our outside Christmas decorations because he thought it was "over". I keep telling people that the vows included "in sickness & in health" ....well, here it is...I have a wonderful support group with my family and they are there for both of us....hang in there as I am trying to !! I'm glad that I found this site...helps me to know that I'm not ALONE !!
Hello everyone. My DH had a stroke 2 years ago, and was diagnosed with AD a year ago. He was immediately started on Aricept and Namenda. He showed signs of improvement, so much so that I asked the doctor if he was sure of the diagnosis. Sadly, he is sure - and we went to the neurologist, who said the same thing. I am so confused! DH seems "normal" most of the time - buy, there are a few things I have noticed. My once very smart husband now may or may not be able to tell me what 50 divided by 25 is. He also forgets to raise the lid on the toilet quite frequently...something he never would have forgotten a year ago, since we raised 2 girls. He forgets to flush the toilet - alot. I have been reading and researching relentlessly since his DX, so I know that these things are to be expected at some point. I just can't seem to wrap my mind around the whole concept - especially when I notice things that aren't mentioned anywhere. Example, when DH used to sign his name, he used big flowing letters. Not necessarily neat letters, but big and flowing nonetheless. Now, he writes very small, and I'm not even sure he knows what he is writing, as you can no longer make out any of the letters. How do you reconcile what you see, or in my case, don't often see, with what the doctors are telling you? Any thoughts?
welcome midari. its a daunting disease that leaves us with so many unanswered questions. the bad news is many drs dont know much about the disease. my DH suffers from vascular and or combo AD as well. he had a long history of high blood pressures that were possible causes of his mini strokes he suffered over the years. the many tests we did confirmed as well the diagnosis and as the disease progressed another added possible AD variant was added as well. many of the dementias overlap in symptomology and treatments. either way the terrible truth is they are all terminal in the end. reconciling as you say is not easy and many of us chose 'denial' as a result of exactly that. trying to avoid what the medical professionals tell us vs what we want to see or believe. over time if the drs are correct of course you will see progression and more symptoms sadly. had to deny after that happens. there are specialists out there if you are close to any and want a second diagnosis just to confirm. there are a miriad of neuropsyhological testings that can be administered as well to see exactly where the brain isnt functioning properly. at any rate welcome aboard there are many of us who have been here for years and many newcomers like yourself. and a range in betweens. hope to see you posting again soon. lots of older posts with tons of info as well. divvi
Welcome Midari. I too, am new . My husband dx recently with atypical AD. You didn't say what stage he is in. Although your description seems mild . My husband exhibited those same signs .. not flushing toilet, difficulty with simple math, problem writing and yes even his signature changed. For a long time, I was in denial and sometimes fear and confusion. When things progressed to speech and language difficulties and more serious memory issues , we saw a neurologist and received the diagnosis that brings disbelief, shock, fear, sadness, confusion and so many questions! I too, felt like you and it has been very helpful to share experiences on this website..Btw. I am 62 and my Dh is 65 . Never expected this to happen now.
I welcome you too ... I'm new with the program also and my husband is doing the same things that your husband is doing....I'm noticing simple things but also some serious things......last night I went to bed and he was watching wrestling (as he always does) ... I hear his voice along with the tv and I get up and check and he said a man on there was staring at him ... I went back to bed and heard his voice again along with the TV ....this is a new for him BUT I could tell that he was tired and when he is tired ...things start to get a little disconnected. He fell on an escalator a couple of weeks ago....don't know why but I'm assuming that he tried to step while it was moving ... so we no longer will be doing escalators or stairs .... elevators are the thing if available. I try to stress with anyone who I leave in charge of him to NOT assume that he knows where he's going because he sounds convincing when he says he is going to the bathroom but he's walked into the women's/family bathroom several times. It is the most baffling disease that I have been personally involved with. I have a note on my phone that I can flip to that states "my husband has dementia" and I show it to people that I think need to know .. such as Dr's - nurses ...etc. When we are out and people try to talk to him, I'm sure that they wonder what he is saying BUT I'm still learning to NOT let it bother me....all of family & friends now and those are the ones that I really care about. Hang in there....it's a long road and I'm afraid it may get rougher but I committed 43 years ago that in sickness & health, I would stay with him ... well, this is the in sickness part.
Hi, my name is Chelly and I am 49 years old, my husband is 56 years old and was diagnosed with Alzheimers disease approx 2 1/2 years ago, I do not know where begin, he no longer cooks (he was wonderful at cooking) no longer drives, his verbal skills are declining and he counts on me for everything, I now have to leave detailed list for him to drink water ,eat the prepared food that I leave and I call him several times a day from work to make sure all is ok. I am not sure how much longer I can leave him home by himself. Most days I do not like myself because I lose my patience with him , I still have a child at home that needs me, a demanding job, elderly parents that need help daily and I have lost my self . I look at him at times and see the blank eyes, and I know I have lost him, I know other people have it so much worse, but it is hard to watch the person that you love fade away, its a awful disease and I am dam mad at the disease and at my self, I will always be there for him. , I am sorry this sounds mad I think I just needed to talk about it., unless you live with someone with this disease you can trully understand.
Chelly, welcome to this group. I am also damm mad at this disease. I can't imagine what you younger people go through with children still at home, trying to hold down a full time job and dealing with elderly parents. There a lot of people in your age bracket who will be able to give you better input than I can. I am 75 years old and DH is 82. I realized he had a problem 6 years ago when we moved here to PA from NJ. I think there were issues before that but I just thought it was aging related.
Thank you Maryin and everyone else, I am sitting here a little terry eyed but it is so nice to talk to some one who is there., I am just so mad and I need to move on, deal with it, take care of my parents, (my dad is dying with stage 5 kidney failure - I am not sure he is going to make it through the week) and I just feel bad,guilty because I look at my dad, hes hurting, hes dying and there is nothing i can do. I could not even look him in the eyes today, .. and I cant really spend much time with him because my husband needs me , my kids need meand I need to work , and I need to be home...I am sorry that you also are going through this, its a reminder that many people are dealing with something every day....its not just me. thank you all for knowing what it is like, no one I know is dealing with this so it is so nice to talk to people that understand
Hi Chelly Here you will find a place where we understand the emotional pain and mental exhaustion you are feeling. But, right now it sounds like you are in an overwhelming and difficult spot. I can't imagine how hard it is for those with children home and parents and a job. You can use some help. Is there anyone who can " visit" with your husband during this crisis time with your dad? Your husband's current state sounds much like mine (he is 65 I am62). He also can't drive and is very upset about that. Do you ave a support group and /or a therapist? Besides caring friends and family , that helps me survive this battle.
This is a forum I hoped never to be a part of, but here I am. My situation is a little different from most I've read about here, but all too similar at the same time. I am 71, luckily in great health, and married to my husband Jim for 30 years. He is 84, and only recently dx with AD. I have worried about his forgetting names of people and things for a couple of years, but I told myself he was just getting older and that these things happen. We live in Ohio and are fortunate to be able to spend the winter in Florida, where we are now. After spending 3 weeks here in the fall, I noticed a change in his alertness when we returned to Ohio. Friends would comment that he seemed to be thinking slowly. I still didn't want to believe it was AD. When we returned to Florida after Christmas he had a huge downward mental trend, and a visit to a neuro confirmed what I feared. The last couple of weeks Jim has been really good, almost back to what passed as normal for the last year. He definitely has trouble with many people's names and he will pick up a napkin and say, what is this called? but his behavior otherwise is not unusual. He doesn't lose track of time or place, and he shaves, showers, dresses himself, eats normally, etc. There are many small events that bring home to me how surely I'm losing him, though, and it just terrifies me. I wonder if any of you have had a similar experience, dealing with a person diagnosed in old age, and if so, how quickly did things go downhill? Until I read some of these posts I had never even heard of the various stages of AD, and am not sure where to place him. My very selfish fear is that I will be dealing with this for the rest of my life. Jim is very healthy, and has been active until this winter, when his interest in exercise has waned. He was a good tennis player, and he played golf until just recently, when he said he isn't good enough to keep playing. I do try to get him to play nine holes with me, just to get him outdoors. We do take walks with our dog. I don't have parents to care for, we both have grown children, and we're financially able to handle this, so I know how lucky I am. Somehow, I don't feel too lucky. I'm glad to have a place to vent and to learn. Linda
Linda, my husband was diagnosed with Mild Cognitive Disorder, probable Alzheimer's, when he was 87. Later that same year, he had to be hospitalized for 1 month for a spontaneous compression fracture of this coccyx. He died of Alzheimer's 4 years later, age 91. Looking back, I think he probably had Alzheimer's for 8-10 years before his death. I think that I read somewhere that the disease progresses more slowly the older the person is when he's diagnosed. Maybe someone will come along and correct, or add to that information. Sorry you have to be here, but welcome. I noticed that you're still young and in good health and with all the experience and information that you can gain here, I trust that it will be a little easier. About the two best bits of advice I can give you are: (1) line up all the help you can get (2) act sooner than later.
Your story reflects my life although I am 81, dh is 86. Approximately 5 yrs. ago dh was having a problem communicating, just couldn't remember the words. Dr. said the spouse is the one who is more attuned to the deficiencies of the patient. At first I thought it was age-related but soon I couldn't deny it was Alz. I could never put dh in a stage. He always straddled the stages. The last year has brought a lot of changes, i.e. many times he doesn't know who I am, suffers from delusions, sundowning. He still showers, shaves and feeds himself. Only one bladder control accident so far but he is wearing Depends. I took away the car keys two years and he didn't complain. For the most part, he is very sweet-natured but I obey what the other spouses say about not disagreeing because their reasoning switch is broken.
DH is physically very healthy although getting a bit more frail. Only med he takes is Paxil.
None of us feel lucky, Linda. There are times when we feel more fortunate than others but then something happens to bring us back to reality.
You have come to the right place to bare your heart and soul. We are here for you.
Linda220, I am 75 years old and and my husband is 82. I first noticed there was a problem 5 years ago when he decided that we had to move away from our dream house ( log cabin on a little lake in NJ) . He said the taxes were too high. We finally settled on this place in PA , 5 miles from the MD and DE lines. At first he couldn't follow a map of remember the directions to get anywhere. Not too many other problems for the next 2 years.
Then he started getting very nasty to me. Finally he got violent, shaking me , slapping me, and telling me he was going to divorce me. Finally about 1 1/2 years ago he came at me with a big iron pry bar. I left the house and called the police. They talked him into going to the hospital for eveluation. The nurologist put him on meds and it has been a downhill slide since. Since last October I think he is in late stage 6.
I have learned so much from being on this site. Keep reading and posting. No one judges you if you have days when you just neet to vent.
Shirley and the Marys, Thank you all so much for letting me know others are or have been in the same boat. MaryinPA I am so sorry for what you've been through. My husband is so good-natured and easy going, it would break my heart if he became violent or nasty. I know it can still happen, so I guess it wouldn't be a total shock, but certainly a radical departure from his usual self. What he seems obsessed by these days is how much things cost and whether he has enough money for something we might want to do. Believe me, at this moment, money is not a problem for him. I have been using our card to pay restaurant checks and other normal expenses and thank goodness for me, because nobody would get a tip from him these days. He wants to save every nickel. If I told him he had 10 million dollars, he'd still think that wasn't enough. This is a new thing and not much like him. There are other little eccentricities but life isn't awful, it's just that I know this is the best it will be and I'm scared and I don't want to give up the good life we've had until now. I know that's a selfish thought, and I know I'm rambling a little here. I just can't say these things to anyone else. I will do what I have to, when I have to, but I'll hate it. I know I'll have a million questions, so you'll all get tired of me, but thank you again for being here.
The money problem seems to be common. DH lost his concept of what numbers really stood for, began to think we were one bill away from the poor house. We would go out to eat and he kept asking how much it was going to cost. He never had a reason to worry. I have gotten to the point where I just lie (or do a "fiblet" as others call it) and say it is free because I have a coupon. This money worry won't last or I should say they won't dwell on it as much as time goes on. I make it a point not to talk about money in any way because he just doesn't understand. Your spouse may want to save money but on the other hand, he could turn around and give it away if you aren't careful. Without saying anything I have taken away his credit cards and left him just a little cash in his wallet. He never missed them. Actually forgot them in time.
All important papers have left their usual places. DH's memory is so bad now he doesn't mention any banks where we do business. The last six months have been very difficult as I watch him lose so much of his memory.
Instead of putting your posts in the WELCOME TO NEW MEMBERS discussion, it might be a good idea to start a new discussion with a new title. You are apt to get a lot more replies that way.
Ours is pretty much the same story of EOAD as the rest, and I responded with panic, confusion, sadness, anger. . . and then found this forum. I read it every day, actually several times a day, because it has helped me find perspective and belonging. My husband was a physician, the kindest, gentlest, most caring doctor ever. When he started practice he made a vow to never turn a patient away because they couldn’t pay. He would often sit with his patients who were dying and for whom he could offer no more medically because he said, “No one should die alone. If I can give some comfort with my presence to the family or the patient during death, then that is my duty as a human being.” In thirty-five years he gave many, many patients a second and third chance at life. The terrible irony is that with this disease, there is no second chance. He gave so much of himself, working night and day, that I think he just broke. After he retired he slept 16-20 hours every day for six months. Most all of the people for whom he went out of his way to help personally or for their family members (staff, other physicians) disappeared when he was diagnosed and retired. I am glad that so many members have mentioned this exodus of the clueless, uncomfortable, and fickle. It helped me to accept their callous treatment and move on, although I will never forget it. Although I love him dearly, I am still working on anger that he spent so much time and energy with other people, and the children and I were never a first priority. The life I kept waiting for will never be. I feel as if I am in a swirling vortex falling down the proverbial rabbit hole as time slips by – I want so badly to get out of this “delayed gratification” ball-and-chain that we have lived our entire lives. I would be lost without my computer and phone to keep me connected to the outside world. Thank you all for the contributions you have made and taking time to share your experiences and wisdom.
Marche, I hadn't read your entry before I replied to your comment about the use of university computers for exams. I know about the frustration of putting your life on hold. That's why, at age 83, I've gone back to university and why the determination that, in spite of being injured in a car accident, I will go back in September. Tell us more about you, what your interests are and maybe, between us all, we can help get your life out of hostage. So many women do put their lives on hold for their husbands' career and that's fine, I guess, but when Alzheimer's comes along, it adds a whole new dimension.
Linda 220 and Marche, welcome to our place of refuge. marche, that was one of the single most tough things since this started, the clueless, uncomfortable, and fickle. May I add selfish and self centered. I would have NEVER thought people would act that way. I have been TRYING now in this later time, to forgive somewhat. However, I did get some love and support from unseen sources, and , this has made me even less patient with so called long time friends that "do not want to see him like that"
Two of the biggest things I have learned through this process are 1. I am so surprised at what a good caregiver I made, and a good wife, and 2. that the smallest hand reaching out, even in a little way, meant SO much to me. I pray and hope that I now will be a better and more caring person to those people that need that hand.
What a wonderful thing for you to go back to the university at age 83. It should be an amazing experience. You will be a curiosity to many of the students and they will be interested and helpful to you. There will be others, self-absorbed and entitled, who may not be nice but I am sure that you know how to deal with that crowd!
Thank you for asking me to tell about my interests. The truth is that I have lost most of them in the last few years and try as I might I just cannot rekindle enthusiasm or passion for activities that once brought enjoyment. I have dealt with huge issues involving my husband’s business and the deaths of family members these last four years and now my former self seems trivial. I hope this is merely the legend of the phoenix and I am just in the ashes stage right now, but truly I don’t know.
And, yes, Coco, how do we explain the demons and angels who now visit our lives? Of all the things I am dealing with, I would say that patience and forgiveness are two of the hardest to practice. A word of encouragement here and there from an unexpected source or an old friend can do wonders to make the day a better one. Remembering the blessings of life helps: Central heat, running water, sewer, grocery stores, automobiles - my goodness, we take so much for granted. I cannot imagine doing this job without some of those amenities. I guess this is all about retooling our lives.
Welcome, JD's girl. You are the first 911 dispatcher I've met. Marche, it's not been easy for you to deal with business issues, family deaths and your husband's Alzheimer's, too. I think that, in due time, you will fly higher. This does not leave us unchanged, but it does help burn off the dross. Patience and forgiveness? I've still a way to go on those two. Drat.
Welcome to all the new members. I feel a special bond with those of you whose LO's have the younger-onset dementias, as my DH was dx at age 60--almost 8 years ago. I have been where you are--through the anger, frustration, hopelessness, etc. In due time, I came to terms with it all and I think I grew stronger because of enduring this ordeal. But I remember the early stages and it was horrible. One of the best supports I had was this site--I hope all of you find it to be as helpful as it has been for me.
Mary75 thanks for the welcome. I feel like I'm drowning here. I was dx with non Hodgkins lymphoma last year and have noticed a decline in DH's motor and verbal skills in the last month. His neurologist doesn't see a problem because DH puts on a good front for the general public. Seriously considering a new neurologist..is it just me? Am I expecting too much from the medical world? I'd like to slow the decline if possible and keep him with me as long as possible...is it just me???????
JD on the first page, down the left there is a place where they are listed.
Your husband's 'performance' for his neurologist is nothing unusual. My husband practices when he knows the appointment is coming up and does better than his every day living. She has dealt with dementia long enough to know that it is just one indicator. She reads my list and listens to what I say and he 'says'.
If you read Joan's blogs you will see Sid was a pro at scoring high on the MMSE when his abilities were much lower. Some are just good at test taking one might say. So, it is possible for them to do real well at the doctors giving the impression that we don't know what we are talking about. That is where it is very important to write things down and give to the doctor. They may or may not believe it.
JD's Girl; Marche, Colin, and any other new member I may have missed,
Welcome to my website. My apologies for being late with my welcome, and double apologies if I have missed anyone. If you have been reading my blogs on the home page - www.thealzheimerspouse.com - you know that I am in the middle of an emotional crisis regarding placing my husband in a facility, so I have been somehwat lax in keeping up with the Message Boards.
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, 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.
JD's Girl - Go to the home page - www.thealzheimerspouse.com - and look on the left side. Scroll down and you will come to a box to click that lists most of the abbreviations.
My husband, who is 72, was diagnosed with AD in September 2012. In retrospect, he had been showing early signs of the disease for several years, as he had difficulty completing sentences, lost his train of thought or used inappropriate words. His doctor at the time kept telling him that he did not have AD, as he passed the memory test. Then in April of 2012, he had a traumatic experience - the car broke down at night on a lonely stretch of road, and it was if a switch had been activated, as he started to show other symptoms, like putting objects away in inappropriate places, confusion, difficulty following recipes etc. In May, he had an appointment with a new family doctor, who scheduled a CT Scan and blood work to rule out other causes of his confusion. Over the summer, he continued the downward spiral, showing other symptoms of AD - hallucinations, delusions, inappropriate attire, sleep disorders, wandering,hoarding, difficulty with finances, repetitive actions and physical weakness. I took the car keys away from him in July, when he got lost going to the corner store, a mile away. By August, he needed assistance getting in and out of chairs and the bath, and could only tell me that he loved me. And I certainly couldn't leave him alone!
After his diagnosis in September, he was put on Aricept and within a week he had reverted to showing only mild symptoms of AD, but I am nervous about leaving him alone for any more than a couple of hours at a time.
I am thankful that I retired when he turned 65 (I was 53), so that we could spend some good years together before AD entered our lives. I am thankful that we live in very peaceful surroundings (we built a home on the site of our former cabin on a small lake), in a small community where everyone knows everyone and you don't even need to ask for help with clearing snow or running errands - neighbors willingly help their neighbors, with no thought of recompense. I am thankful for the support of our children, even though they live an hour and a half away and have busy lives of their own. I am thankful for a sister that lives a half hour away. I am thankful for a very compassionate family physician. I am thankful that Aricept has worked so far, even if it won't last long,
But, I do get very lonely sometimes. We had a true (if not always harmonious) partnership - shared household and gardening chores, enjoyed cooking and traveling together, long conversations about current affairs and other topics. Now our partnership is pretty one sided - I do the chores, the cooking, the gardening, I am reluctant to have us travel very far outside of his comfort zone, and our conversations are rarely longer than a question on his part with an answer on mine.
Anyway, here I am, sorry that there are so many of us in the same circumstances, but happy for the support.
I couldn't help but be impressed with the amount of things you find to be thankful for in the midst of so much tragedy. Most of us do, in time, learn to become grateful for what is still left, but it seems you have this all figured out in the earlier stages. Hang on to that attitude, it will see you through the worst of times.
One regret I have is not taking that last trip. Though he wouldn't have remembered it, it would have been one more precious memory for me to hold onto. If you think you can swing it I would go for it! If you think your DH (dear husband) needs more help than you can provide alone, maybe one of your children would like to go too?
I am sorry you have reason to be here but am glad you found your way to this fabulous group of loving people ((hugs))
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".
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.
Welcome to you, Bonnie. So sorry you have the need to be here, but it's the one place where you can ask questions, rant, rave, whatever you need to do at the moment.
HI Bonnie. Welcome and you sound like such a kind person. I want to repeat something Joan mentioned as it is so helpful. If you have just about any question, type it in the search box and you will likely find out anything you need ot know. This site is amazing.
I am so happy that I found this website, and that you had the courage to start it, joang. I have visited members fora on other websites, but found that they catered mostly to children/children in law/grandchildren of AD sufferers. And I truly believe that being the caregiving spouse/partner of a person with AD has some unique challenges both in terms of care as well as the ensuing emotional roller coaster ride. Case in point - my 96 yr old father has LBD and it pains me that he can no longer recognize me. But, I know he is well cared for and he is, after all, 96. My DH, on the other hand, is only 73, and I go through every conceivable emotion on a weekly basis as I care for him at home, and worry about what the future will bring for us.
Glad I found a place where I can let my true feelings out, without fear of reproach.
Cheval 43 minutes ago edit delete I have been coming back to this site for months before finally joining. I was lost, not knowing where to turn or where to find people who would understand what I am going through. My first visit, I left depressed. I felt like what will come for me in the future is too painful to deal with. Now I am a little better in terms with trying to face each day as it comes. What I miss is the sharing. Not just in the daily routines of our lives, but in the emotional and psychological support that we gave each other. We shared in decisions and plans we made. That is all gone. When my DW could no longer work, I said that's ok, I will become the sole breadwinner. When she could no longer drive, I said "That's ok, I will be the transportation provider". When she no longer could cook, clean, work the microwave, ...... That's ok, I will do all of them. But what I miss the most is sharing our relationship. The 50-50 give and take. Now it is all 100-0. I am not complaining, I am fortunate that she is still with me physically and while she knows who I am and our close family, she is more child-like than adult. I give her all my love and support and will until the end. But I am increasingly finding out that when you give all the time with little in return, it can be a very lonely existance. I am not the type of person who enjoys being alone and frankly, the prospects of that happening to me scares me to no end.
Thanks, for listening and I thank God that this forum exists.
Welcome Cheval. As you have probably already discovered from visiting this site over the past few months, here you will find a place where you can express your concerns, rant and rave, and ask questions, and you will receive in return compassion, love and support, and good advice. And sometimes we even have a few laughs!
From what you have said in your post, your DW is at about the same stage as my DH. I agree, it is a lonely existence, when you have lost the sharing with your partner of everything that you had before dementia entered the picture. But since I joined this board a month ago, I don't feel so lonely anymore. And I am also deeply grateful to Joan for creating this forum, and I thank God that I found it!
Thank you, All of you very much. I have had a difficult time since the diagnosis two years ago. She is EOAD, and at the time of diagnosis was considered to be moderately advanced. My world was thrown upside down. All of the plans we had made for our future and eventually retirement, were thrown out the window. I cried alone for a long time after. I did not want her to see how devastated I was. I have learned to stay calm and upbeat with her, to focus on her success and not her failures. We laugh a lot together. But there are issues and I do get frustrated at times, but never at her, only the disease. We don't have many friends, ones she had earlier have evaporated. I guess they don't want to face this AD. She is more child-like than an adult. I still love her very much, but I have found our love has evolved from the romantic love one has with their spouse to the love of ones children. I feel bad about that. I have been an equestrian until about 11 years ago and following her diagnosis, I purchased horse to be my release and companion. If I would lose my DW to this disease, I needed something that would be my lifeboat to keep me from giving up all together. I have tried to go to support groups, but most of them are men an women my age who have parents or grandparents in full-care facilities and not many if any with EOAD spouses. It makes me angry when I need information they refer me to an "Elder Care" service. We are not Elderly! It is difficult to find someone who can relate to the stresses, issues and day-to-day problems that spouses with EOAD DH or DW have 24/7.
I love my work and I am fortunate that they are understanding to give me the time I need to take care of things at home. I am fortunate that my work is within 3 miles of home. I am finding that my work is my respite. It is much less stressful there than at home. There are many things I have questions, need advice or just to bounce off understanding people and thank God you are here. I do not want AD to claim two victims! Thank you for listening.
You've chosen your name well then. We also have EOAD. My wife showed signs when she was 54 looking back. She is now 61 and we are long down the road of this hard journey.
You are wise to try and keep an anchor/lifeboat. Mine have remained while everything around them has changed including myself.
Welcome to this board. We're sorry that life brought you here; but, I can tell you that the people here helped me enormously at the very times I needed it the most. When I realized I was completely alone, I came here and found out I wasn't.
Thank you Wolf, bqd & Admin, I am sorry that I need to be here, but happy that I found you all. You will be the breath of fresh air that I need. I hope I can be as helpful as you all have been.
Welcome, Cheval. So very sorry you need to be here- but it's the best place when you need support, comfort-a place to rant and rave - scream! Whatever you need at the moment - someone will be here for you.
Welcome to the family Cheval. All that you have written is familiar to my heart. I am truly sorry for all you have lost...... I am glad you found your way to us ((hugs))
Nikki, Coco, thank you so much. I have read your posts off and on for the past year or so before taking the plunge. I remember reading some of the posts early on following my DW's diagnosis and feeling depressed. I wanted to understand what to expect as time goes by. It was an eye opener for me. I searched for a support group locally for EOAD spouses, but there were few if any. This site is a true life boat in the sea of AD. I can't express how good it is to have a place like this that one can go and seek information, ask questions, express fears and concerns and have others actually understand what you are going through. I am not alone! I have felt and I am sure will experience loneliness again, but this site is like family, a warm blanket on a cold night. It feels good. And the hugs are much appreciated.
cheval, welcome, sorry you have to join us but we are a kind, supportive group willing to help you while you are on the dementia journey.
My dh has FTD and was dx'd at age 58, already in early mid-stage. I too got (and still do) upset when I am told he needs to see a geriatrician or geriatric psychiatrist. Unfortunately our spouses with AD or any form of dementia have a disease which is most prevalent in the elderly, so we must do what we have to do to get them treated.
Cheval, I was like you and lurked here for a long time before I took the plunge and joined. I too wrote that it was like a sucker punch to the gut reading all the heartache and knowing what was coming down the road from us. It had such an effect on me I did actually vomit. And like you, before I found this site, I felt very much alone. Like I was the only person in the world going through this hell. It brings great comfort knowing there are others who know the pain we feel. I am glad you have found comfort here. "a warm blanket on a cold night" I like that :)
As it turns out late stage isn't nearly the nightmare I envisioned it to be. I think mainly because through the years of compounding losses I developed better coping skills, but a huge reason is because Lynn has reached a place of comfort and peace. His little world is a happy one and that brings me great relief. If there can be a blessing mixed in with the hell, that would be it.
Just recently found this website and I've been reading the massive amount of comments - what a great, supportive community. I've been learning as much as I can in preparation but I don't think I'll ever really be prepared. Only a week ago I started laying out my DH's clothes for him so he doesn't put the same clothes on he wore the day before. I don't know if I'll ever get used to taking care of my DH in this way. It's heartbreaking, to say the least. He is in his early 70's and has Parkinson's related dementia. He was diagnosed with Parkinson's about 20 years ago. He had a procedure for the Parkinson's which was a miracle. It relieved him of all the outward symptoms and allowed him to lead a normal life without the use of drugs for 20 years. He still has Parkinson's and the outward symptoms are slowly returning but not a big issue. Now we are dealing with the dementia which I have done my best to deny until about 3 years ago. I'm glad I found this place to vent and help me get through this chapter in our lives. Thank you all !!