My wife was diagnosed with Early Onset Alzheimer's on July 14 of 2008. I had a bad dream the night before we went to the Neurologist's as I knew that she was having issues with her memory for some time.
She is on Aricept(may 4th) and Namenda(aug. 11th). She also takes meds for High Blood Pressure.
A short history of my wife's situation.
My wife went on disability back in 2002. She was diagnosed with Post-Polio Syndrome. She believed that she had polio as child (4 years old), but we are not sure as the medical records were lost in a fire in my mother-in-law's house. My mother-in-law is 83 and is in fairly good health. She is adopted and so I am having a difficult time trying to find out if anyone in her family had Early Onset.
My wife was very active. She worked in Hospital Administration for many years and also worked in Manhattan as a legal secretary. She was a writer and the most caring person I have ever known in my life. I married my best friend!
She has had memory problems in the last 3-4 years. (I should also mention that she takes medication for High Blood Pressure) Forgetting the word was usually the most common symptom. However, since early last year 2007 she wasn't able to write a check, pick me up at the bus since she could remember where the stop was, and would repeat herself more frequently. A doctor at the Englewood Medical Center in New Jersey attributed her memory problems to the post-polio and suggested that she use a CPAP device after 3 sleep studies indicated that she had sleep apnea. She tried to use the CPAP but kept taking it off in the middle of the night. Here primary care doctor, never suggested getting her tested for the memory problems and would not even speak with my step-daughter about it when she asked him. He never said a word to me. It was Dr. from Englewood who ordered an MRI last August to rule out dementia.
She had a MRI, an EEG and saw a Neurologist last fall. He proscribed Aricept and Keppra, but never mentioned AD to us. I took the results of the MRI, EEG and report back to Dr. at Englewood, who did not think it was Alzheimer's. He suggested she go to get evaluated for PTSD. Her primary care doctor said in a visit that it was in fact Alzheimer's. We went for a second opinion. The neurologist was here on Staten Island. He ordered a Pet Scan and neuropsychological tests.
We went to see him on July 14th and he confirmed the diagnosis of Alzheimer's.
In early August my wife had not been feeling very well. She had a slight fever and a pain in her right side. I took her to see her Primary Care doctor and he said that she was constipated. He said that she should use a laxative for 2 weeks. On Sunday of that week, she slept quite late and seemed very disoriented when she woke up. She didn't remember that we were married and started to call her family. I was in a panic. She wanted to know what was wrong with her, and I mentioned that she was having memory problems, and she become quite upset. "What happened t me, what happened to me??" was all she kept saying.I didn't know what to do and since she was ill during the past week I decided to take her to the ER. She was admitted after several tests which included a EEG, and CT Scan. Up all night the in ER and we got a room at 5am. At 6:30 one of the doctor's came into her room and told me that on the basis of the CT Scan, they thought it might be Normal Pressure Hydrocephalus. This meant surgery. I was about to go out of my mind at this point. They had gotten all the reports from our primary care doctor and now they are telling me it is NPH and she would need surgery. She was discharged after our primary care doctor's associate conferred with the hospital staff. He said that it was not NPH. The next day, we meet with a PA at the neruologist's practice and she says that it is not NPH and that the hospital made an error.
We contacted Columbia University and we are trying to get an appointment with a neruologist who is an expert in AD. He called me later that week and said that it was not NPH, but yes your wife has AD. We met with him at the end of Sept. and pretty much confirmed the AD, but also mentioned getting a Lumbar Puncture.
I feel that if I don't find a cure I will have failed my wife. But I guess you have all felt that. How do you all deal with this?How do you continue to work Full Time and deal with care-giving? Should I quit? Will I have to at some point? She doesn't seem to be interested in Adult Care? She is a VERY PRIVATE person. She has Medicare Part A, and is covered by my health insurance, so should I get Part B and D? No Long Term Care Insurance, so how do we become poor enough to get Medicaid and still eat and have a roof over our head? Why is the treatment for AD so, well, almost non-existent and not very promising? How do you center on caring for the person rather than wallow in self-pity? I don't want that.
guy=why is your wife on Medicare at such a young age-does she have disability unrelated to dementia? You won't be able to get long term insurance at this point. We all get overwhelmed-feed us problems one by one and we'll be with you. Others in this group are also dealing with young spouses. Glad you found us.
She receives disability from SS due to the Post-Polio, and she also had long term disability insurance so she gets that as well. I vascilate between being over-whelming and being in shock. I don't mind at all taking care of my wife, in fact I love being able to help her in anyway I can. I just need to know that I am doing all that I can. Glad I found you too.
I should add she is probably one the best cooks in the world and she's helping make the meatballs tonight!!!
guy - personally I think it would be best for you to continue working as long as possible. You will be tied down soon enough and the stimulation of work will be of benefit to you personally, even if it is only part-time. There will come a time when you will have to quit work. Does she need 24/7 care? I guess that might be a deciding factor. I have a young lady come to my house 4 hours one day a week to be with DH and clean my house at the same time. I recommend that to you, unless you like to run the vacume, clean bathrooms and wash dishes.........
This is a great site and you will find a lot of good advice from others smarter than me.
Welcome to my website. We all understand how overwhelming this is. You will find much support and information here. First of all, go to the home page of this website - www.thealzheimerspouse.com- and look on the left side. Start with the topic - "newly diagnosed" and read that information. Then scroll down to EOAD and read that one. Scroll down some more to read "Finances". And finally, read "Understanding the Dementia Experience". When you get a chance, look at the "previous blog" section and scroll through all of the topics, choosing the ones that are of most interest to you.
This is a long journey - all of us are at different points in it, so we are able to help each other. After you have read those topics, you will have a better idea of what questions you need to ask of us on the board. You can also go to the top of this page, and search out topics, but I would definitely urge you to read the side topics on the home page first. Check in with the home page daily, as I write a new blog almost every day, and there are always news and information updates.
We are hear to listen to venting, offer support, and give as much information as possible. We have doctors, nurses, therapists as members. Someone always has an answer or a place to look for an answer.
Whoops. Almost forgot to mention - we have lots of guy members too. They're just quieter than the women. Hopefully they will see your post and respond.
Guy, Welcome to the group but it would be nice if we never met under these circumstances. you have lots of questions and there are many here who deal with spouses with EOAD. its double bad when it strikes those so young. you will need to take a deep breath and take one day at a time for now. if she is still functionable at home and safe to be alone then i would think you should keep working as long as possible for the benefits and income. you will eventually need either adult daycare or someone to come help out with her in the future. you may want to hear from some of the guys here who care for wives they will be of much benefit to you. when shes making those meatballs get in there and learn how to do it now for later!!! some guys were complaining the didnt know how to take over the cleaning and laundry and cooking so get your feet wet early on...divvi
Welcome Guy. I too continue to work full time since my husband was diagnosed. My work (and this website) are my lifelines right now. I have in-home help through the state 9 hours a day, 5 days a week. I'm sure qualification probably varies from state to state but when I called our local Agency on Aging I found out that even with me working and him drawing social security we still qualified for help. There is help out there, it can just be kind of hard to find. I had not found this website when I was looking for help so it should be easier for you since you found it first. Good luck
My husband has early onset Alzheimer's Disease and your wifes symptoms are much the same as his. I spent many years also getting a doctor to take this seriously,was often told it was due to stress and for him to take fish oil. I finally had to have a serious breakdown myself before I could get a refferal to a memory clinic for him. Unfortunalely due to the fact he has had aggression issues they would not put him on AD medications as they told us they could increase this. We are doing sympton relief medications. He also has serious myoclonic jerks which they are treating with neurotin.
Husband is 68 and I at 52. We have been dealing with this at least 5 to 6 years. He is entering stage 7.
I think that you have found a wonderful place to come for support. One of us will always have advise,a shoulder to cry on and not a judgement one. This has been a blessing to me.
Its a difficult road,yes. But you will find that you will adjust to most parts and that you will learn to roll with the punches. I have managed to do more than I ever thought that I could. Theres help out there.
Guy: Everyone is at a different point. My dear husband (DH) died 5 yrs ago, but I hang around even tho I now have a pretty good life. I want to suggest you talk to an accountant or someone before you decide to quit work. It may or may not be the best option, but it will probably be considered sooner than you think. Many have quit work, thinking they'd go back in a year or two, but it easily turns out to be much, much longer. During that time skills and seniority are lost , younger people come on board and getting back into the work force can be very tricky. If you can do it financially, it may be better to hire someone. Don't dismiss adult day care too easily. Many caregivers think it won't work for a loved one, but if done right and with the assistance of the staff, it most often does work out. Take it one day at a time, ask any question, let us help you, no one has better advice than those who have gone before. We all look for more, hope for more, rant and rage at the air, we all want our lives back, but there are no secret cures, no magic tricks. You will be her protector, advocate, make all her decisions--do it all--and be proud as you do the most difficult things you ever imagined. Nothing is better for her than your love, your smile, kisses, hugs and laughter.
Guy – Very similar situation. I’m 53 and caring for my wife who was diagnosed last year at 51. A long drawn out ordeal trying to find a Dr. and neurologist who would not only listen but pay attention to my wife’s behavior and her performance on the mini mental status exams. Finally took her to Mayo where she was scheduled for 7 days of testing. After less than 30 minutes of first day, Neuro told me “severe brain dysfunction, moderately advanced ALZ”. I had known it for 2 years. At this point in time, she fluctuates between stage 5 and 6 and, as I have observed from reading, consistent with EOAD she is slipping at a pretty steady pace. I have to work full time and, as others have mentioned, you need it as much for the relief as for the financial reasons. It is a way to “get away” from it and also to have adult social interaction with others which simply can’t happen at home anymore. So, I strongly suggest you make plans to keep working. I can no longer leave my wife alone. Too many close calls and crazy things happened. I brought out 2 home health providers to our home to interview and learn about their program. One was associated with the hospital. At the end of the interview she said “You should just divorce your wife and let the State take care of her like everyone else does”. See ya. Kind of consistent with all my other experiences with the local med community. I hired the other agency but that just didn’t work out. My wife was still aware enough to realize that someone was in “her” house babysitting her and she made it hell for both of us. Pretty expensive too. I convinced my oldest son to move home with us to help me. He’s a chef and there are many very nice restaurants in our area. He works Thurs – Sun evenings. So far, it’s working out but both our patience is wearing thin. She is NOT a very cooperative patient. I advertised for a “companion” for Thursday & Friday afternoons until I got home from work. I thought I would get a college student but actually found a local lady who doesn’t have the greatest social skills but has a heart of gold and was certain she wanted to try this. We’ve been doing this for about 3 months now and it’s working. One day I’ll pick my wife up and she’ll say she doesn’t want to go there anymore and the next day she will say “I really like spending time with her, we have a lot of fun”. They do lots of different things and most importantly my wife gets to spend some time with another female. My anger and grief these days is 1) STILL trying to get over the very poor performance from our local medical providers when I was asking for help and 2) the disappearance of her family and friends and seeing how lonely DW is. How best to cope with this? Well, before finding this site, I finally came to the realization that no matter how mad I got, how unfair it was, how sorry I felt for both of us or how hopeless the future looked, continuing to think that way was NOT going to change it. It is what it is and I need to deal with it. I try to find the bright side and for me that is that she is not in any pain. Since finding this site, it has helped me further accept the situation and focus on successfully managing it through the many great ideas others have shared. I’ve also learned that no matter how much pity I want to have, there is always someone else that has it worse than us. I hope this is helpful. I’d like to one day feel like I’ve given back just a fraction of the help that I have received from this site. Good luck Guy, we’re all in the same boat. Chin up, full steam ahead. Thenneck
Welcome Guy. You said in your first post "I feel that if I don't find a cure I will have failed my wife. But I guess you have all felt that. How do you all deal with this?"
All dementias are terminal. There is no cure. That is a very hard thing I've just said. Hard to deal with. Hard to take. And a hard thing for me to have said. It is also the truth.
This is a disease that kills caregivers. That is also a hard thing for me to have said. It is also a very hard truth. You deal with the fact that the disease is terminal, and that there is no cure, by choosing to survive it.
I have chosen not to allow this disease to kill me. I went into therapy until I no longer could leave my husband for the number of hours I needed to leave him to get to the therapist, have my appointment and get home again. But I went.
I come here. Not only is this a great support group, it is the BEST source of information on this disease I've ever found because not only do you get the wisdom of people who have been there and done that, we've got some amazing researchers in the group. If it is online, WE WILL FIND IT.
So Welcome. You have come to the right place. It is OK to vent. It is OK to say the unthinkable here too. This place is safe.
Thank you all for your comments and insight. I am so glad I found this site.
joang I will take your advice and read as much as I can here.
I should add that I am a wee bit younger than her(I'm 51) and this has really been difficult for both of us and just caught me completely unprepared.
Our relationship has been very close, like the proverbial two pees in a pod, and I must admit that we had been attempting to live a bohemian life, despite all of our responsibilities. We were like two teenagers, madly in love and always looked forwarded to going on vacation. Getting away was our mantra and travel was our greatest joy. Finding a new town, hunting down old dusty book shops in search of that elusive title. Hiking up mountains in Vermont, going to shops to find the ultimate utensil for the kitchen. She is an amazing cook. We had met in a bookstore. I was the manger of the shop and she worked for me. She was looking for an old book by Lawrence Ferlinghetti called "Coney Island of the Mind". I got it for her and we both knew we had found our soul mate. I remember we were looking at the new Calendars that came in that Christmas and there was one that had photos of beautiful old Castles. As she was looking at it, I leaned probably a bit too close to her, and I asked her which one she wanted. When she found out that I was a musician, she encouraged me to play again. When she heard a song I had written, she pushed me to go to a recording studio and record it. I wrote a song for her and she was willing come into the studio to do the voice over at the beginning of the song. It was fun to watch in the studio doing the voice over and we gave her such a hard time!! She made our lives whole and full of wonder and indescribable happiness.
My wife has been so supportive of me throughout our lives and I am more than willing to do what it takes to care for her. The thing is, she has been the caregiver in the family. She took care of everyone, no matter what was needed, she broke through every barrier to help her family and her friends. And I saw her do this with total strangers as well.
We live in New York City and she was going to work on the morning of 9-11-01. She was on the express bus coming out of the Brooklyn Battery Tunnel, when the bus driver told everyone to get off the bus and head down to the Staten Island Ferry Terminal because of all the smoke. She witnessed the 2nd plane go into the South Tower. As she was running, she helped people who were hurt to get down to the ferry, and saw a man that she used to work with, on his knees and in a panic, not knowing what to do. She picked him up and dragged him down to the ferry terminal. She insisted that we go to our local parish and pray at the altar that we and our family were safe and to ask God to help the families who had lost family members and what we could to help. She is the most extraordinary human being I have ever known.
It is beyond ironic, that now, she is the one who needs help, and I feel that I am so inadequate to the task. She used to be so proactive for herself when it came to medical issues. At the door to have her blood work at 6am, or dragging my butt to get any tests I needed despite the fact that I was kicking and screaming. She, by force of sheer will, which was indomitable, would see that everything was done. Now, she doesn't want to go to see the doctor, she knows that something isn't right, but seems to have fallen into what she used to call, "infinite resignation". Now I'm the one, who has the responsibility and I am scared and feel just about useless, and I sometimes let the anxiety get in my way. I can't let that happen anymore and finding this site, even in just the past 24 hours has helped me a great deal. So much thanks to all of you for responding to my first posting.
Guy, your love story is truly inspirational. The feelings you two feel for each other comes thru in your post, and i am sure you will do just fine at the caregiving role ahead of you. my best, divvi
Thanks so much. BTW, I made the meatballs last night. Not bad. My wife is showing me all of her tricks and she says I'm becoming a good cook. I find that I love cooking. The cleaning and laundry are a challenge, but the hardest part for me is finding the time to do a really good job. It really is a 36+ hour day.
I just wanted to add my welcome and to let you know you've arrived at the most helpful site in the WHOLE WORLD! Then, I read your story...so powerful and special. You will not fail her by NOT finding a cure. I struggled as have many (most I'd say) to find out what IT was, to RULE OUT the other things that seemed scarier (at that time)..then to finally have the PET scan confirm this was, 'suggestive of Alzheimers'. We finally knew what it WASN't. For about '5 minutes there was a sense of KNOWING the enemy and feeling that we could at least grapple with the KNOWN. I've learned that no two cases of this are the same but from the many who contribute here, there is a rich source of help and understanding. Again welcome
You do actually know what to do, Guy. Your wife has shown you. You've been in training for this ever since you met her. When you get over the shock, you will be able to grab hold and start making plans and decisions, and that will make you feel much better. You have time, it doesn't all have to be done this very second.
After finding out about the diagnosis, many of our members have decided to travel as much as possible for as long as our spouses can enjoy it. With your love of the bohemian lifestyle, I think you'll find frand's story particularly interesting. Her husband was diagnosed with Mild Cognitive Impairment (MCI) in June 2003 and then mild AD that December. They traveled quite a bit, I think their last overseas trip was to Norway in Jul 2006. They sold their house in April 2006 to live full-time in their motor home, traveling all over the country, living a little while here and a little while there, until just three months ago. Her husband developed pain in his abdomen in early July, originally diagnosed as gall bladder problems, and died six weeks later. He was late stage 4 or early stage 5. frand still posts here.
As far as finding a cure ... many of us are in clinical trials or looking for a suitable one. There's a thread on the subject (however did it fall off the first page? I'll bring it to the top for you) -- "Drug Trials/Vaccine Trials". If you think you and your wife might want to consider this, let us know. We're always looking into the latest news on the subject.
Welcome Guy, I am sorry you have the need to join us, however, you will find truly kind, helpful & non-judgemental friends here. It was a Godsend when I found this site. My husband is 57 years old, he has FTD. Started having memory problems about 6 years ago now, however, he was not diagnosed until July of this year. I have learned so much from this forum, mainly, take it one day at a time. I pray for strength, guidance, patience & more patience. You might check out the "Where are you from post & What are the Ages"
Well you certainly have a headsup on cooking lessons now! bravo, now you wont ever miss her cooking-you will find you are much more capable of running the home and caring for her than you thought, divvi
Welcome Guy, sorry that you are in this boat with us but glad you found us. There is a thread on "Things I wish I had known in Stage 2 and 3", that may be very helpful to you for your future planning.
I have continued to work throughout all of this and am so glad I did. Work provided an anchor for me in a world that had gone crazy. I did have to change the type of work I do somewhat as I could no longer put in lots of overtime or devote myself to running projects but my boss has been terrific about structuring my job so I can continue working.
You are very smart to begin to learn some of your wife's and your favorite recipes so you can keep cooking - and you lucked out by finding out you even like it. There is a wonderful thread for sharing recipes, we like to check those out too.
It actually sounds like you are doing very well in running the homefront and have started working on what you need to do for caring for her in the future. Give yourself more credit, this is a huge load to bear and when the one you would share it with can no longer be there to help, it addes to the load.
There is another thread you might find useful that talks about telling a spouse that they had AD and what is wrong with them. My husband wanted to know so I kept the explantions simple and factual. He always seemed satisfied with that. Somehow he always knew even as the disease progressed when someone was handing him a line and he was never happy with that.
It all comes down to finding what works for her, you and the both of you. Welcome again.
Welcome, Guy. There are many men on this board, you'll hear from them one by one. I think it's probably harder for the men since they have to learn all the ADLs (Activities of Daily Living) that their spouses did automatically.
A couple of things I haven't seen mentioned yet: on the money front, get to an elder law attorney asap, and get all your legal documents in order, powers of attorney, etc. Do it for both of you at the same time so she doesn't feel singled out. And find out all the ins and outs of medicaid, etc. And be sure that you have all the sigs on credit cards, etc - try to get all ways to spend money (except some in her wallet) away from her asap - look up some of our old posts on this. That's essential and a step that usually people take only after they've had a problem. One of the first indicators to me of a problem was my husband sending, over a year, $2500 to the ACLU. About ten times what I'd send, though I support them!
Another thing to know: Things change. What wouldn't work last week will work today in dealing with her, but maybe not tomorrow. Don't commit, for instance, to any expensive thing she might like today, but never use again.
YOu may want to ask the doctor for an anti-depressant for her. The one my husband's taking, an old one, has made a night-day change in his attitudes.
Welcome Guy, I was very touched by your love story. I don't have any more to add to the above, but wanted to let you know you have found a safe, loving and informative place. I know you must be frightened, but you will find answers one at a time.
Hi, Guy! (Always thought it'd be cool to say that)<grin> Thought of a couple moire things you'll want to do. First, since she is on SSD and has Medicare A, with the enrollment time starting soon, you may want to check into getting her set up with B and D. If she qualifies for D and you don't sign up there are penalties in nthe premiums to do it later, and you can generallyt only get on during the open enriollment time. All her Medicare coverage would be primary for her and your coverage would be secondary, meaning that potentially nearly everything would get covered. Then look into Medicaid for further coverage when/if needed. Alsom, I don't know how much driving you do there, but start taking more of it over. The more she gets used to not driving, the easier it should be when she has to give it up entirely. That has been another BIG issue fopr our LOs.
Stick with us. We will all get through this with the help of our friends.
Andrea was 58 when she was diagnosed. She was the ultimate cook, housekeeper, seamstress, and so much more. I can't do any of that, I don't want to do any of that, and I hate all of it. I did as much as I could, though. Still hate it. I never wanted to learn how to use a washer. The dishwasher wasn't so bad, but that washing machine....hate it. Now I let my daughter do it. And I hate cooking for one.
I can't remember "cooking for one" but I doubt if I would cook very much. I have friends in the "1" situation and they don't cook much. I have a problem cooking for 2. I always have leftovers. Luckily DH will eat leftovers. I can cook 2 meals a week and have leftovers for 4 or so meals later. So, since I am not fond of cooking any more that works pretty good for me.
Like today, I cooked pinto beans with ham. I have 4 meals in the freezer. I cook a 3# beef roast for dinner, have sandwiches for a couple meals, roast beef and gravy over toast a couple times. Did you know mashed potatoes freeze great if you use mostly cream cheese and butter with just a little milk, use a ice cream dipper and freeze then transfer to plastic bags.
Guy - I rattled on so long this morning and forgot to tell you 2 things very helpful for coping. Patience, Patience, Patience. And.......a sense of humor. Thenneck
Hi Guy, If anyone understands your situation ,it will be here! My hubby was diagnosed with EOAD at the age of 51. He is now 56. We have been married 36 yrs. Things are slipping away quicker these days. Before he was diagnosed, he lost his job (and ALL insurance benefits when they let him go) and two others he tried to do, so I closed my home business and went back to work for insurance until last yr when it all became too hard to handle. Adjusting is MOST difficult when the shock all sets in! It is easy to be in denial for awhile. I can SO understand your anger and hurt for the "friends" you thought you both had. I just think they don't know how to handle it and head the other way. If you can find a support group near to you, or church group, you may find some all NEW true friends and also you will find very caring ones here!! One day at the time is all you can do! If the anxiety gets too much, you may need to see a dr for help with it. That was something I HAD to do to go through the days sometimes. There have been many nights I have cried myself to sleep for all the closeness we had that I now so much miss. It is like I am his "Mom" now. The other day, he saw my name on a piece of mail and asked "WHO is that??" I tolfd him me thinking he was joking and he seriously siad "Is that your name really?" You often feel robbed- how could he not know my name/??? There are always things that will shock you on and off. God bless you through this journey !
Hi Guy......... Glad you found this site, its wonderfull .... My wife was diagnoised in July of 06 and as was with most here, we all go through the same or simular situations and difficulties as you... Dee is now 61 and first started to show symptoms in her mid 50s... Do your best and thats all you can ask... Life becomes lonely,, Don,t dwell on what coulda woulda shoulda and don;t dwell on the future as you learn of whats to come .. live for today.. You will for the first time in your lives realize your true friends and family... Good luck and visit here often... It seems we guys on this site are less for writting then the gals, but we all love our spouses just the same... Dan
Thanks guys. I can't tell how good it feels to be in contact with guys that are going through this. I'm planning to go to a 'live' caregiver support group here in my area, but I just haven't had time to go.
About family and friends, I know it isn't easy, but so far, everyone has been very helpful. I could talk about my emotional state, but I don't have enough time right now, just to say that I love my wife more then I can describe. It is hard for me to go through this, and I hope that I can adjust. She is my dearest friend. I am struggling now to know what to do. Being here has helped and I know it will continue to do so. I want to do as much as I can and I am afraid that I can't. When we go to bed, I feel like I am abandoning her if I turn the other way to fall asleep. I just want to hold her in my arms all night. All day too!!
Thanks for making me feel at home here everyone! guy
Guy My wife is 51 and I am 60. She was diagnosed in Oct 2007, with memory problems a couple of years before that. This summer there was a rapid decline. We went into the hospital in mid-September and go out October 4 after 17 days of hell. She was diagnosed with small cell lung cancer that had metased into "all" her bones. This was good news/bad news. The oconologist did not think it was AD, then cancer; that the cancer was causing the dementia. For a while, I thought I was out of the AD business. She was put on oxycontin for the pain and started chemotheraphy in the hospital. Now I'm not sure where we are. The dementia is worse with new symptoms of "I don't know you", "get out of my house" and "I hate you" all the while she is trying to "go home". We've lived in the same house for 25 of our 30 year marriage, so "home" is some other place that she cannot describe. We've missed two chemo appointments, because "I'm not going anywhere with you". I've taken her off the oxycontin (still no pain) and am hoping she is just having withdrawal symptoms. Our next chemo is scheduled for Monday. dking
Guy As you start this adventure, this is a great place. Solid people that know how you hurt. Caring for a spouse is different. One other thing that I've experienced from a male perspective and is disconcerting, people see what you are doing and say or think something like, "Look, he's giving up everything to care for his wife, isn't he wonderful". I don't feel wonderful. It never occurred to me to do anything else but make as many happy days for my wife as possible.
Thanks so much for responding. I am with you in spirit as you go through this as well. I only slightly know the "I don't Know You" symptom but I know that it was one of the worst feelings I had ever experienced in my life. My wife has been fighting me with going to see the doctor's and test as well. It is gut-wrenching to go through. I had to drive into Manhattan several weeks ago, with my wife being so very upset. I just took it. I let her be quiet for quite some time. My sister-in-law was with us for moral support. That only made my wife feel worse. I dropped them off at the office so that I could park the car. When I got to the waiting room my wife was in tears and her stress level was through the roof. She had asked why she was there and my sister-in-law said, "you're here because you have Alzheimer's"! We made it through the day. Barely. She still remembers that! Of all things!
Please let me know how it goes on Monday. I'll be with you.. thinking of you!!!!
Yeah I know that feeling. I don't feel wonderful either. This is not only what I should do, I want to do this. It's not even in a question in my mind. I read somewhere that there are cultural differences that account for how people view care giving. My parents were from Italy and it was family first.
I should add that I have gone through something like this before. My mom had diabetes. I gave up working and traveling as a full time musician and part time college student to live with my folks to help my dad take care of mom.
She lasted just about 7 years. I took any and every job I could to help out. I did it because I wanted to help. If only more people felt that way.
Guy what truly wonderful memories you have and will have in those little glimpses that will come to you that we all treasure the most. Some of us vent about the darnest things maybe about the lawn mower or poop patrol or those incideous lies we must tell our spouses just to get them to eat or bathe. We here laugh and cry and yes SCREAM we all have been there, done that, or have to face the inevitable. We don't judge no matter what. There are topics about hate and the AD devil that posseses our LO. I have never found an online group that was so helpful. Thanks for finding us. I was told yesterday by a County on Aging social worker that my DH and I are called the newly weds because we are always seen holding hands and hugging and yes they have seen us in his NH hospital bed watching TV together. I know that the time will come when he no longer will remember to want to snuggle and have the closeness he is showing right now. So believe me I am savoring every moment because tomorrow it might be gone. A few months ago I was ducking things that he was thowing at me, fists, hateful words, anything he could get his hands on. So welcome friend. This disease can take a whole lot from us caregivers but not our good memories.
You do have a very inspirational story on so many levels. I also met and married my soul-mate later and with both of us being a bit more mature. I think that is why we were able to skip all of the tumultuous times other younger couples go through. We also like to do things together, not so many big extravagant things, mostly little things. Very early in our relationship we drifted away from giving each other material items to commemorate birthdays or holidays. Instead we committed to spending time with each other to create memories together. I think that is why I am taking this so hard. Knowing this disease is taking away all of my gifts to him over our lifetime together.
I'm kind of mystified why her doctors are even subjecting her to chemo. Her chances of surviving metastatic small-cell lung cancer must be darn close to zero. You might buy a few extra months of life, but given what she's going through (and you) with her dementia, where is the quality of life?
I only speak of this because I watched my father die of non-small cell lung cancer (much better odds of survival than small-cell). He went through surgery and radiation at Mayo. It eventually metastasized to his bones. He endured tremendous pain (oxycontin didn't begin to control the pain). Towards the end, he was offered chemo. When he was told it MIGHT buy him a few more months, he said no thanks, the pain was way too much. Hospice gave him morphine, which finally controlled the pain and hastened his death.
I hesitate to even comment on this situation because it is a real situation with real people in it who are trying to do the best they can.
But the general situation is something that I think all of us need to think about. We end up talking about what we would do if our LO found themselves fighting a different terminal disease in addition to dementia. I have already decided that I would not fight that other disease. I have already decided that if something else takes him before dementia can, it would be a good thing.
Because we have so many newbies, maybe it is time to talk about it again.
You always have a better way of putting thoughts into words. I'm not questioning dking's judgment in this matter, I'd probably take my wife (an ex-cigarette smoker) to chemo if she had lung CA. But dementia, and the fact that it is also a terminal disease, throws such a big monkey wrench into the whole decision making process. One thing I've learned about specialists is that most of them (NOT ALL) only care about the body part or disease that they specialize in - they don't consider the person in total (as always - your experience may differ).
I probably shouldn't have commented to begin with.
iggy No problem. I welcome the opportunity to talk about my decision process. Our progress with EOAD has been classic. It has tracked exactly with the 7 stages. My best guess is that were 5, dabbling with 6. At the beginning of summer, a new wrinkle showed up, pain. For an hour to an hour and a half each day, she was in pain that she could not describe, other than "my knees hurt" or "my shoulder hurts". I tried aspercreme, tylenol, actemophine, asprin and ibuprofen. Ibuprofen took a little of the edge of, but only after a half a hour. The most effective thing was getting her into a hot shower. I don't know if that did anything other than force her to focus on something else. We went to family practicioner, who refered us to a series of specialists, xrays, MRIs, etc. Everything came back negative. Still the daily pain ritual continued. I became better at it. I could recognize the signs that it was coming, timing the ibuprofen better, dressing her in looser clothing for more efficient shower entry, etc. I finally press the FP. Yes, it is important to find the source of the pain, but I need the pain to stop. I say I, because my DW had no recollection of the pain a half hour after it's over. I was still working so going to all these doctor appts is a logistic problem. FP says lets put her in the hospital. In August we were there for 2 days for a series of tests. Nothing discovered. Meanwhile, DW is still functioning well, all things considered and looks fine. (continued next post)
(continued) The next month was like a time accelerator. AD tracking through the stages, except each day was about 4 months. For example, complete incontinence from one day to the next; no more accidents every few days. Physically she is looking worse and worse. In a regular monthly followup visit to FP, the FP said (paraphrasing), holy crap, what happened? The last time I saw her she was going grocery shopping with you, now she can barely walk. We went into the hospital immediately and started the tests described elsewhere in the forum. FP said if we don't go to hospital now, she'll be gone in a couple of months. The diagnosis was not just small cell lung cancer. The oconolgist said he did not think that there were two diseases. It's possible that there was AD, then the cancer, but he thought the small cell lung cancer was causing the dementia, too. He was clear that the cancer would not be cured, but maybe we would have one or two years. After the bone scan the next morning, he said maybe six months. He also indicated that with chemo, the dementia should reverse fairly quickly. Six months without pain and without dementia made it an easy choice. Now we are two weeks out of the hospital and one chemo session behind us. Each day she is a little better. There are fewer hours where she doesn't know me. (Last night I slept 7-1/2 hours in a row. I had door locks installed. She can now roam and rage all night. I can sleep). I think that it was AD, then cancer. The overall goal was to have as many happy days as possible. The cancer will kill her, but we had a very good day today.
I'm with you 100% - fwiw I would do the same thing you're doing. I'm glad to hear the dementia symptoms are getting better. I hope you and your wife have many, many more happy days together. And thanks for sharing your story.
Iggy, you too are trying to do the best you can with the problems that have been handed you. And I agree about most specialists been too narrow in focus, which is why I'm pulling us back to my husband's primary family doctor as being the main doctor. And I always made sure he was dealing with all medication and testing issues.
dking, it is good that you told us that the treatment is doing some good. I'd do the treatment too if it reversed my husband's dementia AND took away the pain even if it meant that his total life span got shorter.
Which brings me back to the discussion I really wanted to have. Because there are situations where you DO treat our LOs even when we've decided that most treatment is useless. How do we decide which ones those are?
I am a bit late but wanted to welcome you as well :) I felt just as you do now when I first found this site. Finally a place where people truly did understand. I gained more in my first 24 hours here than I did on all the other sites in the past 7 years!
My husband Lynn, is also my soul mate. Though I didnt have to learn the same things you are, cooking etc.. I did have to learn how to manage all the things he did. And let me tell you he did more than I ever gave him credit for too! We didn't seek a diagnoses until he was well into stage 5, by then it was to late for him to teach me
I learned the hard way, trial and error! It was so hard at first. Not only was I losing my love, my best friend... but now I was the sole worrier and absolutely everything depended upon me. *EEEK* I was already disabled (I'm 41 now) I was scared to death to be truthful. But, I did learn, and I have survived! I can now change the oil, put up storm windows, fix a lawn mower, put in a new toilet , hang sheetrock etc etc
I look back now, years later and am in awe that I (we) have come so far. I no longer have the overwhelming fear of what Alzheimer's will take. Now I know, it wont stop until it claims him. So I have set up protective barriers. I protect Lynn as much as I can. I hold onto our love and memories.. I hold them so tight to my heart that even AD can't steal them.
Keep fighting, it is a horrible disease. Most are. But, we DO all adjust. When it gets too much, come here and let us lift you up. Keeping you and your wife in my thoughts and prayers ~Nikki
Thanks for the welcome. What you wrote here really hits home with me. She will always be my best friend, no matter what, I pray that I will always be hers. I do have difficulty staying focused and I find that if I just work on a few things I need to do for that day, I'm better able to handle things. But there are times, for no reason at all, where my emotions just gush like a never ending wall of water, and I feel completed crushed. I have found though, that I feel that I'm feeling much too sorry for myself, and not really centered on my wife... but when I do, it ends up worse for me emotionally and I can't ever understand why this happened to her and not to me. It should have happened to me, she's a much better person then I could ever be.
Awww Guy.. big hugs for you. I am not being biased, but I truly do think when a wife becomes ill it is harder on the husband. I think this is because as men, one is use to being the protector. And sadly, you just can't stop AD. When I was first diagnosed with my illness, I swear it was harder on Lynn! He hated having no control over my pain. Poor bugger.
You know Guy, I am not going to lie to you. This disease will take so much of the women you fell in love with. From simple things like important dates to you both to eventually forgetting people she loves... it is a horrific disease. But, I can tell just from your post thus far you have the strength needed to see you both through it. Having the deep love you do will sustain you through the more difficult times.
Lynn is but a shadow of the man I fell in love with. He is now in later stage 6. Is my love for him the same. No, it can't be when you lose communication and marital relations. Is the love just as strong? YES! It of course isn't what I wish for ... but I have let go of the what could have beens long ago. Right now, this is so new to you. You have every right to be damn well overwhelmed!! You have every right to be crushed and feel sorry for yourself, and for your dear wife. Letting your true feelings out will give you strength. Once you are able to move beyond the the stages of grief AD brings you will find yourself where I am.
The sadness is still there, but it will get easier I promise :) I am glad you found your way here to Joan's place. Here you can share whatever you wish. No one will ever judge you. You will find people who have been where you are, are where you are headed.. and there is just nothing that helps as much as knowing others ARE surviving... sharing with people who truly know your pain. Keep posting, together we may just make it :)