Hello everyone, What a wonderful relief to have been directed to this website. I have sooo may questions I don't know where to begin. Does anyone have time to respond?
cs....welcome to this site....the official "welcomer" will find you soon and give you a lot of information.....but, in the meantime, ask any questions you have...someone will always be around to help.
YES YES YES I could do cartwheels right now. I've been looking at other dicussions and am amazed at what I am reading. So many people with the same concerns and questions as I. Looking forward to being an active member. Thanks
CS I felt the same way when I found this site. It has been a God send. I have learned alot and it is conforting to know that other people are their for me.
cs, Welcome! You were directed to the right place, you will find that we are all in the same boat. Not a fun one, but with everyone's support here its tolerable. Each step of the journey is a little different for all. But you can get great info and share ideas. Best of Luck! Rk
CS welcome! its a huge relief to find a site dedicated to spouses of AD. we have our own particular set of issues and pitfalls. we are keeping our ship afloat here with solid handson info from troops in the trenches. everyone has some experience on a topic needed so find your particular one and ask all you want. many of newer members are where you are and have many questions. there are many of us here who are war veterans and many on active duty with no leave in site.haha. hope you post often. good tos ee you here. Divvi
Welcome to my website. There is a thread at the top of the message boards - "Welcome to New Members". As soon as someone knows you are here, many will welcome you. You can also post information about yourself and your spouse in there. Or here.
I started this site because there were no resources specifically for spousal issues, which are so different from caregiving for a parent. You will find a wealth of information and support. Please log onto the home page - www.thealzheimerspouse.com - and look on the left side. I would suggest starting with "Newly Diagnosed/New Member" - lots and lots of resources in there. Scroll down on that same side and read "Understanding the Dementia Experience", which is the best explanation of dementia that I have ever read. Also, be sure to click on "previous blogs" and scroll through the topics. There will be so many you can relate to.
Check in on the home page every time you log on, as I update the news and blogs every day or so.
Everyone here is on a different leg of this journey, so there is always someone who has been where you are and can offer help. Sometimes all we can offer is understanding and a hug, but that can be very valuable.
Hi & Welcome CS, I am so sorry you have the need to join our family, however, I am glad you found us. I am sure you will find everyone kind, helpful beyond belief & non-judgmental...there is no flaming here. My husband is 58, he has FTD. Please if you feel comfortable, tell us about yourself. :) Kadee
welcome cs, I am fairly new here to was sooo excited to find it, i am sure you will find alot of helpfull friends to get you through your worst times and laugh with some of the good times, I seem to need to check this site everyday just to get me through, i am a very shy person and everyone made me feel welcome
I too have to check everyday. I think it has to do with feeling so alone out there - we don't fit anywhere. And this group is safe - you can talk honestly about your every thought and feel safe. Even though my husband just has MCI, I still feel like 'one of the gang' here. I say 'just' because he has not been officially been diagnosed with AD. We both expect it to come eventually due to family history, but also hold out hope he will be one of those that does not progress.
Back in the mid 90s when I was in a severe depression, I belonged to a Christian depression support group. It was a life saver cause I could say things there and not be condemned as being anti-Christian or horrible or wrong. I was one of those that 'cut' and my counselor was very upset about it when she finally found out. On the group, many had been there too and there was no condemnation - just understanding and love.
I believe that is what this group is: understanding and unconditional love.
Hello CS and Welcome to our world. We have men and women with spouses in ALL stages...so we can answer most questions...or cry with you...or laugh with you. Just say the word. Just curious but how did you find out about this site? I tell everyone about it....I don't just check this site once a day. I check everytime I get chance. Ann
Welcome cs. I guess most of us check this site more than once a day. You can learn more here than any book you'll ever read. We can share everything here.
CS, another great thing about this site is the info is from people that are living it every day and have for years. I have read some of the medical tpye books that make sugestions that tells you ...they have not a clue what the REAL world wtih AD is like.
Hello everyone and thank you for your warm welcomes. My name is Cathy my husband is John. I am 55 and he is 65.We've been married for 33 years. Johns official diagnosis came in Aug. though it was 4 or 5 years in the making. Dr. believes it is vascular dementia affecting the FT lobes. The lingo is new to me so I may make mistakes. We saw a specialist at UPMC. Two days of tests that were gruling for John and $1300.00 later we were only told we could try aricept. After taking aricept for 2 months John developed a sudden and violent GI bleed. ( he takes coumadin ) He nearly died. I'm not discourging aricept. John had an ulcer that no one was aware of. Things have gone downhill rapidly since then. John needs round the clock supervision and guidence. I have not worked since Nov. Something I dearly miss emotionally and financially. Anyway-looking forward to learning and living on this great website. cs
Welcome, Cathy, you'll be blessed with all kinds of help and support here by caring people. I'm glad I was "found" and directed here. Two days of tests sounds dreadful. My hsbd has vascular dementia and takes aricept and namenda along w/stuff for high bp and cholesterol.
cs, basically everyone here is dealing with someone with SOME KIND OF DEMENTIA!!! And usually insurance etc will accept a diagnosis of "dementia" as opposed to AZ. We don't make any distinctions between those dealing with EOAD, LBD, FTLD, AZ, MCI, you name it... We're all fighting the demons. Their color doesn't matter.
Is John at home or in facility? WE don't care, we love you and support you either way. Welcome!
briegull, John is home and we are coping. Spoke with our family Dr. briefly on Sat. He said,"We will haveto do something with John soon." I have a solo appt. with him Mon. It has been one emergency after another. First the GI bleed followed a month later by emergency prostate surgery. Then last Sat. he passed out cold at the kitchen table and was hospitalized for 3 days. The very next day he overdosed on Coumadin while I was sleeping. Now that I've vented about some of our problems I want everyone to know John is now a very sweet and tragic figure. Thanks for taking an interest! cs
Hi Deb Do you want to share or vent? I am interested to know about younger couples dealing with FTD as the symptoms and progression is different from AD. cs
Welcome cs. My husband also had issues with Coumadin and his doctor and I agreed that at this point in time it is more dangerous than helpful. Read and post often. Knowledge is power.
Grannywiskers-I was referred to this website by someone on the alz.org site. She said that while it was a good information site that I might be overlooked because most of the posters are adult children caring for their parents. Wish I had gotten her name...I will be forever grateful. cs
I am always curious about how people find this site. I found it with a Google search. It has been a lifesaver for me and I only wish I had had it during earlier stages. Sure would have helped save a lot of tears.
I found it with a google search too. But I have also been told about it on the Alzheimers site. This was when we were first facing the possibilities of what my husband had. Turned out to be FTD.
cs -welcome! My name is Diane and I am 53, DH is Dave and he's 63. We are all in for a very long journey, and as you can see, not a pleasant one. My hubby is still functioning well, doesn't work or drive anymore. These boards are what help keep me sane. Hugs! ~Di
Hi Di-thanks. your situation sounds very similar. John neither drives or works. Would you be comfortable in telling me what functioning well means to you? I have a problem with stages and symptoms. xox cs
I was also referred to this site by someone from the alz site when I asked if any there were caring for spouses instead of parents. I thank my lucky stars for whoever it was.
cs, functioning well means different things to different people. Most would say that if they can follow one instruction at a time, walk, dress themselves, feed themselves (not prepare it, but just use a knife, fork and spoon to get it into the mouth), bathe themselves, brush their teeth, and respond that they are functioning well. Others include talking to you (as in carrying on a conversation), making the bed, doing light chores, and being able to take walks around the block (or more) by themselves is functioning well.
As my husband has progressed with this disease, my definition of "functioning well" has altered greatly! Now, we have passed the functioning well, and he is in the needs help stage. He can walk (slowly) and if his food is cut up, he can still feed himself; he needs help dressing himself, brushing his teeth, bathing, and is partially incontinent. He can sometimes follow the one direction, but not if asked to hand you the paper (he doesn't remember what paper is - or most names of things).
Also, note that each person goes through various stages at different time intervals, and some skip some things that are listed in a stage, or have symptoms of two stages but not all of any stage. The saying is "if you have seen one Alzheimer's patient, you have seen one Alzheimer's patient."
My husband has had a very rapid decline - diagnosed February 2007 and already entering stage 7. Others have had it for 12 years or more. This insidious disease has more quirks and timelines and we just deal with each new symptom as best we can. This site gives us the opportunity to find out what is coming and how to deal with it. It is our family. I hope I have answered some of your questions. Others will tell you more! Welcome.