|
|
|
|
Originally posted by: Pop'sDot
Similar experience though my wife stage 5/6. Though not diagnosed until stage 3/4 I am sure she was at least a 2 15 years ago.
|
|
|
|
Originally posted by: So Sad
Jean,
My husband is now 58 and I have been taking him to doctors since the beginning of last year. I knew something was wrong, he would ask me the same thing several times within a few minutes, started losing important things like his wedding ring and Rolex watch, but the worst thing was when he got out of a vehicle while it was in drive and it rolled into a pump jack. He was at a ranch so nobody was hurt, but it finally made him realize I was right and he needed to go to the doctor. We have had so many tests, CAT scan, MRI, EEG, EKG, Angiogram, MMSE several times, he scored 15 out of 32, bloodwork for B12, thyroid, lyme disease, DNA testing,urine testing for heavy metals, you name it. He has been taking Namenda for a year now and it has helped, but it makes me crazy that the doctors only say some form of severe dementia and for some reason they can't tell you what exactly it is. I realize it is not until death that they can tell you it is AD, but it is so hard to plan ahead not knowing how long this will last. I have to work, and I am at such a lose as to how to plan our future with no time line on this horrible disease.
Jean, How have you managed for so many years? It is a terrible disease, and you must be young too, I can use advice on how to deal with this from someone in the same situation I have found myself in.
|
|
Joined: 1/14/2015
Posts: 40463
|
Originally posted by: Jean N
My husband is in his 10th yr of Early Onset Alz. We were told 3 yrs ago he was in end stage. He is 61 yrs old and I had to place him in a NH almost 3 yrs ago. I have browsed the boards for yrs, call the Alz helpline frequently, but after attending A local Alz Conference last week and feeling so at peace there I decided it was time to give the MB a try. I would like to hear from some wives who are going through this experience to compare "notes". In my case, my husband fell through just about all the cracks you possibly could. Took yrs just to get him properly diagnosed. But still would like to hear from anyone who feels like talking to me.
Thanks
|
|
|
|
Originally posted by: jfkoc
We do not have much in common so I will just welcome you to this wonderful group of caregivers.
There are many who are caring for a loved one with EOAD. I am certain they will post.
|
|
|
|
Originally posted by: Mimi S.
Hi Jean, Welcome to our Foprum. We're so glad you found us and it's obvious you are in the right place for the feedback you are seeking.
|
|
|
|
Originally posted by: JAB
Jean, I'd like to add my welcome to the others. We are just coming up on 6 years after the diagnosis, and while you and I might be about the same age, my husband is quite a bit older. And because he is older, we didn't fall through any cracks ... we had an excellent PCP who did his very best to find another reason for my husband's problems, but there wasn't much doubt about what was causing them. He is now stage 6e, but still a sweetheart and relatively easy to care for, and I still have him home with me. Your journey, wow, it's been awfully hard. I hope we can make you feel comfortable here, and help you, at least a little bit.
|
|
|
|
Originally posted by: Jean N
quote: Originally posted by So Sad:
Jean,
My husband is now 58 and I have been taking him to doctors since the beginning of last year. I knew something was wrong, he would ask me the same thing several times within a few minutes, started losing important things like his wedding ring and Rolex watch, but the worst thing was when he got out of a vehicle while it was in drive and it rolled into a pump jack. He was at a ranch so nobody was hurt, but it finally made him realize I was right and he needed to go to the doctor. We have had so many tests, CAT scan, MRI, EEG, EKG, Angiogram, MMSE several times, he scored 15 out of 32, bloodwork for B12, thyroid, lyme disease, DNA testing,urine testing for heavy metals, you name it. He has been taking Namenda for a year now and it has helped, but it makes me crazy that the doctors only say some form of severe dementia and for some reason they can't tell you what exactly it is. I realize it is not until death that they can tell you it is AD, but it is so hard to plan ahead not knowing how long this will last. I have to work, and I am at such a lose as to how to plan our future with no time line on this horrible disease.
Jean, How have you managed for so many years? It is a terrible disease, and you must be young too, I can use advice on how to deal with this from someone in the same situation I have found myself in.
Dear So Sad,
The first thing you do is take a deep breath! I still have my bad days, don't sleep much, I was never alone in my life and after 3 yrs it's not any better. But I do my best. By the way, I'm 58 yrs old, we have 3 sons,the oldest will be 40 lives in Canada with his family. The other 2 are here in NC with their families. They are 37 and 34. We're transplants of 23 years from PA.
Here are some suggestions that I hope will be of help to you.If you don't have one get an Elder Law Attorney (one that specializes in Elder Law only). Mine has been a God Send but I waited, do it as soon as possible. Use the helpline and the MB. Call your County Council for the Aging and see what services are available. I live in a rural county and they wouldn't help because of my husband's age but you don't know until you try. Touch base with the Ombudsman for your county. You can also look into Adult Day Care Centers in your area. And especially get with your local ALZ Chapter, they should have lots of info for your area. Also don't forget to do something special for yourself!
I recently attended an ALZ Conference and it was wonderful. If one shows up in your area seriously consider going. The neurologist who spoke used to see my husband for the time release Aricept study,(which didn't work too well for him). But he said in the end does it really matter what type of dementia it is, basically they all have the same end results. When he said that it made me feel better. I had my husband diagnosed at Wake Forest Baptist Med Center, in their Memory Clinic. They first thought it was Lewy Bodies,but after the last Cat Scan or MRI came back they decided it was EOAD. Then the first NH sends him to a different hospital and they changed it to Lewy Bodies. But the neurologist told me it is common to have both. By the way he also said that the current ALZ Meds are inadequate for the most part.
I'm so glad I got to hear this doctor speak because I was having a bit of a dilemma and he kind of helped me make my decision. In March my husband began to have trouble chewing and swallowing, they have been telling us for the past 3 yrs he could go quickly. So when this began happening I started calling around because I wanted to donate him for ALZ Research, not much post mortem happening out there, plus they won't tell you the results anyway. That part really frustrated me at first because they said my husband has the gene so naturally I'm concerned for the boys and grandchildren. But when you donate you sign away all rights. The only way to know for sure is a family ordered autopsy, then the body can't be donated. I have no funds to cremate him so I've done a whole body donation. They will cover all costs, we only need to pay $15.00 for postage for his ashes and for the death certificates. This was a very hard decision for me but he always checked the box on his driver's license to be an organ donor so in the end I feel I made the right decision.
I hope I haven't rambled too much or overwhelmed you I know this is hard but somehow we get through it. I sincerely hope I helped and write to me anytime. Take care....
Jean
|
|
|
|
Originally posted by: R Copes
Jean
I also knew something was wrong with my husband when he kept asking the same questions over and over again and kept losing all his possessions. This went on for several years and after 2 years of testing, including every test known to man he was finally diagnosed stage 4 8 months ago. He has been on Aricept and Namenda and I have not seen a change in him at all. He is still working but just for 2 more weeks. He will be 60 at that time. I am also at a loss because I really need to work, but how can you leave them alone for 8 hours a day. Hubby would wander off if I left him for that long. With no time line its difficult to get your life in order. I have been trying to sort all this out for the past 8 months and still am wondering. I was glad that he was diagnosed but then you don't have any idea about a future. They say it has its own time line and its hard to plan a future without some idea. I am lost in this world and trying to just muddle through. I hope you find some peace. Welcome to the message boards. Glad you found us. We have a great family here to support one another and I invite you to the chat room too. Almost every night there is someone there and we talk about everything. Maybe this will help. God Bless and hope for a safe journey
|
|
|
|
Originally posted by: Jean N
quote: Originally posted by JAB:
Jean, I'd like to add my welcome to the others. We are just coming up on 6 years after the diagnosis, and while you and I might be about the same age, my husband is quite a bit older. And because he is older, we didn't fall through any cracks ... we had an excellent PCP who did his very best to find another reason for my husband's problems, but there wasn't much doubt about what was causing them. He is now stage 6e, but still a sweetheart and relatively easy to care for, and I still have him home with me. Your journey, wow, it's been awfully hard. I hope we can make you feel comfortable here, and help you, at least a little bit.
Dear JAB,
Thank you for the warm welcome, I didn't expect such quick responses from people. I've been messaging to some of the others, who are just starting out on their own journeys, telling them more of my story, hoping it will help. My heart goes out to all.
I recently went to an ALZ Conference and met the counsellors from my local chapter that have helped me for years. It was wonderful. I am hoping to be able to do some type of volunteer work for the ALZ ASSOC in the near future here close to home.
I browsed the MB for yrs and I'm so glad that I finally joined. But it's better that I waited, I had a lot of anger to get over. I'm still very scared about my future but I'm working on it.
Hope to hear from you again soon.
Thank You
Jean
|
|
|
|
Originally posted by: Jean N
quote: Originally posted by R Copes:
Jean
I also knew something was wrong with my husband when he kept asking the same questions over and over again and kept losing all his possessions. This went on for several years and after 2 years of testing, including every test known to man he was finally diagnosed stage 4 8 months ago. He has been on Aricept and Namenda and I have not seen a change in him at all. He is still working but just for 2 more weeks. He will be 60 at that time. I am also at a loss because I really need to work, but how can you leave them alone for 8 hours a day. Hubby would wander off if I left him for that long. With no time line its difficult to get your life in order. I have been trying to sort all this out for the past 8 months and still am wondering. I was glad that he was diagnosed but then you don't have any idea about a future. They say it has its own time line and its hard to plan a future without some idea. I am lost in this world and trying to just muddle through. I hope you find some peace. Welcome to the message boards. Glad you found us. We have a great family here to support one another and I invite you to the chat room too. Almost every night there is someone there and we talk about everything. Maybe this will help. God Bless and hope for a safe journey
Dear R,
I am so glad to have received so many posts in so short a time. I have 10 yrs worth of experience to share with anyone who would like to hear it. I just finished writing back to So Sad, the things I recommended are the things that have been getting me through. Please refer to my reply to her and see if any of my suggestions might posssibly help you.
I know the feeling, your whole world has been turned upside down, there are so many things that they can only guess based on their experience. I have been on pins and needles for 3 yrs now waiting for "that call". The disease works differently from person to person. They call me in March, tell me he is losing the ability to chew and swallow, they now puree his food. Then they call me last week and tell me he put a Bingo chip in his mouth and chomped it in half. Of course, it only meant his brain signalled right at that particular moment.
I'm 58, hadn't worked in yrs, I currently receive husband's Disability because I'm in our home. But it will die with him and I won't be eligible for widow's benefits until I'm 60. My biggest fear is not being able to get a job at my age. So it's a good thing you are working. Again, refer to my reply to So Sad you may find something helpful.
Let me know when you go on the chat, I haven't tried it so I don't know if it will work or not.
I'm more than happy to share my experiences with everyone who would like to talk to me and I sincerely hope I can be of help!
Take care and hope to hear from you again soon.
Jean
|
|
|
|
Originally posted by: Jean N
quote: Originally posted by So Sad:
Jean,
I am glad you answered me back, I am turning 50 this year so I guess one of my biggest concerns is for DH when he gets worse, cause I have a long time before I can quit working. I have checked into Alz groups and the closest is a 2 hour drive so that is mission impossible at this point, I don't even go grcery shopping without him. I have made an appointment with another Neurologist at a large Medical center in Dallas that specializes in Alzheimer's, but what worries me is it is an 8 hour drive or 2 hour drive and then fly. Living in a rurual area makes things more complicated.
My husband is in fairly good physical condition according to his regular MD. all test were very good when I took him for his regular yearly physical this March.
I never know what to say when he asks me whats wrong with him, do you have any suggestions? He asks me if he is dying and I tell he we all are, but not any time soon. I have explained that he is physically in good shape, but his memory is failing him and that is what I am for, to help him remember.
There are a few others that I have seen post occassionally and have talked to on the chat room that have EOAD spouses, so I am hoping maybe we can get some good info from you since you are further down this road then me.
I don't know exactly what stage DH is in, Neuro calls it moderate, on here they use numbered stages, I am guessing 5. I can still talk to him, but he doesn't alway's understand me, he is not able to dress without assistance, I have to cut his food, but he can feed himself, sleeps alot more then he used to, gets paranoid, sometimes angry, sometimes rude,I have to make him shave someday's and someday's he doesn't want to shower. He is afraid to be left alone so I take him to work with me and grocery shopping ect...I am sure there is more, but I wanted to catch you up on my story so any advice is welcomed.
Dear So Sad,
If you think your husband is up for the trip to Dallas, that's a hard decision you have to make. My husband was sent to a new NH a year and a half ago way out in the country 2 hrs from us. Since they tell me they don't think he will last much longer I have tried to get him back closer so we can visit him but at this point they are afraid it would not be good to move him.
I don't know if you know who Linda Dano is, she used to be on a daytime soap. Anyway, when they used to do women's bios on Lifetime she told her personal story about her Dad, he had ALZ. At the time, she was dealing with it they didn't know as much as they do now. She moved him from CA to the east coast and in his case it didn't go so well. I don't want to scare you but she said when they were on the plane her husband took him to the bathroom and something upset him. He decked her husband and the attendants put him in handcuffs before he could explain he had ALZ. He did take a downward spiral.
I understand by what you're telling me about your husband, at that stage mine was a lot like that, except mine only took catnaps. I can tell you after we would go to one of the grandchildren's parties, places like Chucky Cheese he would be fine while we were there but hours later he would flip out. One time he chased me around the house trying to punch me in the face. They call it overstimulation but because of the brain disfunction it can take hours for them to react.
It got to the point where I had to do everything but feed him. He no longer understood what a wife was he only knew I was a girl. He seemed to regress to the stage when a boy no longer is comfortable with his Mom seeing him naked. The worst time was when I had to take him to court to have him declared incompetent. The lawyer took us to the men's room and guarded the door. I took him in the stall because by that time he needed to sit all the time for "obvious reasons". He got in one of those moods when I tried to take his pants down, yelling "STOP IT - YOU ARE MAKING ME NAKED" as he kept pulling them back up. I told him we were in a Court House and he will scare people, and we don't want the police to come. I got lucky that time it worked and he let me help him. They get very unpredictable, I guess you have to weigh both sides, and how important it is to you to know which dementia it is. The only thing I can say is that even when they tell you it's EOAD or Lewy Bodies etc. it is still an educated guess based on their experience. That's why it's only conclusive at autopsy. I know you're frustrated and my heart goes out to you, I've been there, I beat my head against the proverbial brick wall for years. I just got to the point where I just accept what is is. I love him dearly, I regret all the things he will miss with our grandchildren, by no means have I given up I will always think of him. It was time for me to turn my life in a different direction. I can't do anything for Bob but love him and see that he gets the best care possible. I would just like to be supportive to the ones they leave behind.
And by the way you answered your husband's question about dying just perfectly. You are doing a great job and when you need help take advantage of the helpline and MB any services available, that's what they are there for. And don't forget to indulge yourself once in a while. Be strong and write to me as often as you like.
Take care....
Jean
|
|
|
|
Originally posted by: So Sad
Jean,
I am glad you answered me back, I am turning 50 this year so I guess one of my biggest concerns is for DH when he gets worse, cause I have a long time before I can quit working. I have checked into Alz groups and the closest is a 2 hour drive so that is mission impossible at this point, I don't even go grcery shopping without him. I have made an appointment with another Neurologist at a large Medical center in Dallas that specializes in Alzheimer's, but what worries me is it is an 8 hour drive or 2 hour drive and then fly. Living in a rurual area makes things more complicated.
My husband is in fairly good physical condition according to his regular MD. all test were very good when I took him for his regular yearly physical this March.
I never know what to say when he asks me whats wrong with him, do you have any suggestions? He asks me if he is dying and I tell he we all are, but not any time soon. I have explained that he is physically in good shape, but his memory is failing him and that is what I am for, to help him remember.
There are a few others that I have seen post occassionally and have talked to on the chat room that have EOAD spouses, so I am hoping maybe we can get some good info from you since you are further down this road then me.
I don't know exactly what stage DH is in, Neuro calls it moderate, on here they use numbered stages, I am guessing 5. I can still talk to him, but he doesn't alway's understand me, he is not able to dress without assistance, I have to cut his food, but he can feed himself, sleeps alot more then he used to, gets paranoid, sometimes angry, sometimes rude,I have to make him shave someday's and someday's he doesn't want to shower. He is afraid to be left alone so I take him to work with me and grocery shopping ect...I am sure there is more, but I wanted to catch you up on my story so any advice is welcomed.
|
|
|
|
Originally posted by: So Sad
Linda Diane,
I keep missing you on the chat lately, I don't get on there every night, just a few times per week. I hope you are well, I have been thinking of you alot lately. I am so worried my husband seems to be declining quickly and I have that sense of dread. I don't know if I am just looking for things and my paranoia is getting the best of me, but he seems to be forgetting more lately and the Namenda was doing such a good job, but now what do you do?
I keep thinking that at the rate this is going it won't be long till I have to make some horrible decisions. I have to work and I am so worried about care for him if he gets much worse.
I just wanted to pop in and let you know I am thinking of you.
|
|
|
|
Originally posted by: Linda Dianne
Hi so sad
I am feeling better. The sinus cold I had is almost gone.
It was nice to hear from you.I know what you mean on husband declining. I have been noticing that hus is getting worse on not understanding anything I say. It dose not matter if I say it in short sentences or look him stright in the face. It is like he is not there anymore. we was outside at my buddy house next door today and we was in the back yard. Hus started to go out the gate and I look at him in the face and said do not go out gate. well he went on out gate. My buddy said he did not understand a word I said. So I see that I am not the only one that see that in him. I am like you with the way he is going I may have to make a decision on what to do next too. And it scarys me to death. It is just him and me that lives here. I do not know how I would do without him here. But I do not that God will be here and he will help me through it and I have all of you wonderful people to keep a watch on me. I thank God for all of you. I was thinking today that it has been three years and one month since he was diag. And to think that he was having trouble way before then. So that means he had it even longer then three years. I wish I could have seen it then and got him to the doc sooner. But like it would have made any differents. Oh I hate this aweful disease.
Well I sorry I am so long winded to night. You take care and God bless you So Sad. Your sis in Alz Love Linda
|
|
|
|
Originally posted by: SherylS
quote: never know what to say when he asks me whats wrong with him, do you have any suggestions?
My DH got remembered a comment that the neurologist made so he'd tell people "my brain is shrinking".
He doesn't have the same as your hubby, but my BIL did. He filed for SSI to start getting his social security check early.
|
|
|
|
Originally posted by: Linda Dianne
Hi Jean,
I am caring for my husband that is 59 and was diag three years ago. He is in stage 5 to 6. I can look back and see that things was not right before his diag. But just thought then it was cause he was working so hard and was just tried. I would never have thought that at 49 I would be seeing my husband with alz at such a young age. The first few stages it seem like he flew throught them. I have been so shocked at how fast he had declined. At first I was in shock and did not know what to do. I looked everywhere for help. And I felt like I was the only one going throught this. Then I found this website and chat line. I thank God I did. This forum and chat line has helped me so much. I have meet the most wonderful people on here and I now know that I am not alone in this. I look forward to get to know you and hope you come and visit the chat line. I have very strong Faith in God that he will be there for all of us. God bless you Jean. Your sis in alz Linda Dianne
|
|
|
|