It was so helpful seeing that others have the same guilt feelings of lying and the word fiblets has helped me alot to take the sting off. Is there somewhere on the site that says what the abreviations like DH etc mean? my husband is 86 I am 82 we are both in good health. for some reason It seems to be easier to be moe patient as time goes on. we've been married 65 years.
If you go to Joan's Welcome page and scroll down on the goodies on the left you will find a list of abbreviations. We do tend to become creative with them ;-)
ro-didn't realize you were a newbie-a very warm welcome. When you see a * after our names you know our struggle is over. Some of us stay around to help. Very little we haven't already seen or done.
My husband is 85 and moderate stage Alz. Still good physically which is great in my book. We will get through this somehow. Patience is a virtue so we are a bunch of virtuous spouses.
Hi just joined. My husband 77 was diagnosed 3 hrs ago I just had bilateral knee replacements. My husband doesn't quite comprehend the seriousness of my surgery. Patience is a virtue--running short of it.
Welcome ro & Genevieve to your virtual support group. We are here 24/7 so come back often for the support & understanding of people who really do understand!
welcome Ro and Genevieve. you have found a good group of folks who know how you feel and what you are going thru. all of us at different stages of the disease but pull together to help each other make it thru this terrible journey with our spouses. feel free to add to any topic or conversation. divvi
Hi Ro and Genevieve, welcome to the group! We are all here for you whenever you need us and be assured that we will all understand anything that you have to say, at any given time one of us or more are going through the same thing that you are.
Glad you have joined us, Genevieve. No one can do this alone. We are all doing the best we can and we have terrific help from Joan and all the spouses.
Big hugs and welcome to Ro and Genevieve! Indeed you did land in a soft spot. Stay and read often and post whenever and whatever you feel like. Everyone understands and is willing to offer non-judgmental assistance and support. If you've thought it or worried about it, somebody else has too and can offer their comments.
Welcome Ro and Genevieve--sorry you are here, but welcome, anyway. Ro, I am 81, lost my Dear Husband (DH) to Alzheimer's Disease (AD) in 2003 but I stick around. Genevieve I know what you mean - had emergency appendectomy and DH never did 'get it.' Never understood what had happened to me, was just so happy when I finally came back home.
Thank you all so much for the welcome..I'm sure you've all felt the relief that I have felt in reading what goes on in others daily lives and know you're not imagining things. I only get asked the same question a couple of times a day and now see that the "false" memory is all part of the journey. He has accepted that he has short term memory lose but nothing more. We laugh alot and pray alot so I know we will be okay but it sure is a comfort being able to talk to you guys.
Good morning, my name is Terry and I am new to your sight. My husband is an Early Onset Victim, diagnosed at 55 and we are now in the beginning of the mid stages. I live with the question each day "can I be anymore exhausted then I am today?" and the answer each day is yes :) I do have to work full time and have to pay for care a couple of hours a day so he can have lunch and not lock himself out of the house all day ! I am currently experiencing being drop from our insurance and can't get SS to grant us access to Medicare part B. I am stunned on how uncaring people can be about the disease. I hate that "you poor thing look" people give you. I don't want there lame looks I want action to help a person with a disease they didn't ask for and no one would wish on the worst enemy. Today I pick my sister up for a weeks visit. She has been the only one that will come and give my respite care once a year for "a girlfriend" weekend away. My son as dump us "can't take seeing his father like this" what BS and my daughter in law a Hospice nurse ......doesn't that bite. Well I have gone on long enough time to shower and begin the day. Thanks for listening Terry
Welcome, Terry54. You will find you have lots of company on this site. Some have been where you are now and will have invaluable advice. We have heard everything, Take our hand. We are here 24/7.
Thank your Shirley what a wonderful kindness ....you have made me cry, thank you that hasn't happened for a long time now. I do really look forward to being part of a community that understands and cares. I think those who love us care but can never understand the walk unless it's yours. Thanks again off to get Sis ......
welcome Terry! many of us find ourselves dumped by family friends and children. its our burden in their eyes since we are the marital partner and falls solely on our shoulders. this is a group of great caring handson folks who know the disease and how to help get thru it (hopefully_ ) with our sanity intact. feel free to join in any conversations. its good to have your sister giving you help. divvi
Hi Terri54, welcome to your virtual support group. We are a bunch of people who really understan so come back often to vent, cry, read what we write & maybe even sometimes laugh. We are here 24/7 for you.
Welcome Terry54, but sorry you need us. Is your husband receiving Social Security Disability? If so, it takes 2 years to get medicare.
My husband has FTD (frontotemporal dementia) and was diagnosed at 58. He is now 61. I'm 52. I'm not sure what stage he is. He can do all his own ADLs but cannot be left alone due to no judgement of what is safe and what is not.
Terry-sorry I didn't greet you earlier but I have been spending time with a dying friend. I wish I had found this wonderful site when my journey began. We are all here to help each other.
Welcome Terry54, AD sucks, and we all hate it. The best we can do is muddle through it and make the best decisions we can as they come up. Hang in there.
Thank you all for welcoming me so kindly. Yes, Grannywhiskers it sucks big time. And the sister here for her visit should of stayed home!!! When she comes for my respite weekend away she's doing me a big favor, this however is not been any help. What's funny and scarey she thinks "she so in the know" Have no energy to recount her stupidity but Saturday will not come fast enough. On the Medicare issue, hubbie is entitled to the coverage, but HE incorrectly make the box not knowing, the card was hidden from me just found in May and now SS says two bad see you next year, feel free to have NO medical coverage for a year ! So all medical expenses, drugs are out of pocket. And my Senator "sorry, we ask them to reconsider and they said no" This is of course having submitted all Medical documentation that he wasn't competent to make the choice, nor could he have understood the mistake. And of course can't ask him now. A government full of idiots, who really don't get Alzheimers and no clue to people in their 50's with the disease. So now off to my full time job and let's hope my sister doesn't annoy Hubbie to much. It's Monday and at least I have my Dunkin' Donuts coffee :)
Welcome to my website, which I started in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It 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". This part definitely applies to you and your spouse, Terry - there are 4 sections for EOAD (Early Onset Alzheimer's Disease - now called more appropriately YOUNG onset) members - two of which focus on the young teens whose parents have Young Onset. 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.
Welcome Ro, Genevieve and Hey There! Terry54 from another Terry who also has an early onset spouse. I've been at this officially meaning since DX for 4-1/2years. DH is meant to be "dear husband" although I'm sure I am not the only one who occasionally means "damned husband.". I used to ask myself also if i could get anymore tired or depressed or more angry at this disease and I finally learned yes yes yes. But I have also learned that I survive and that even coming out of the darkest of places there occassionally will good moments, moments of deep love, enjoyment in cuddling with my beautiful loving Bichons, appreciation of natural beauty. For me it's one moment at a time these days, dark and light.
Hi, I'm new to this site. My husband was just diagnosed in Jan.,2011, but he has has been declining for several years. I work as a nurse so I take care of people all day and then come home to more of the same. I have the skills, just don't have the strength or desire.
Lori wrote you message on other thread you posted in. I have seen told by several nurses in NHs and ALFs they could never do what i'm doing. I wassurprised and they always say it is different when it is your family.
Welcome Ro, Genevieve and Terry, sorry you had to join us but you will find all the help you need here and if not just ask and you will fell the love and concern of fellow travelers.
Hello everyone, As they said when I joined "Sorry you have to be here" but it is the right place.
BTW - Whoever you are and whatever you are there is company here. Rural, urban, young, old, profesional, blue collar, retired or still employed, etc, etc.
Lori, I am an RN and my AD wife WAS an RN. (Symptoms at age 55 Dx at age 57) I dont know your experience but I do know that NONE of my RN training prepared me for this! AD was not a problem when I went to nursing school 20 years ago they did not teach it. (heck, it was hardly covered in my CNA classes) If you have not studied up on it lately, there is a lot to learn.
To everyone who just joined us just speak up (or yell) you will get answers here. :-) Jim
Thank you all for your welcome. I'm finding that when family asks about DH they really don't want to know. I have worked most of the past 20 years with folks having heart procedures so usually they are still making decisions and don't have any type of dementia. There still seems to be a huge difference between the experts and the spouses who live with it 24/7. I've learned so much here already and don't feel so alone.
welcome Lori RN. there are several nurses here to keep you company. the wonderful thing about this particular forum is that we all deal with dementia spouses of varying varieties. and we know how you are feeling. feel free to join in any topic, lots of handholding and hugs when you need them. divvi
LoriRN, it's not just family, but everyone who wants to be polite and say hello and knows you're supposed to add some question or remark. I think in my case it's been so long since I was able to talk about anything else that they can't think of any subject we might still have in common. I now answer by saying he's doing fine, is happy and safe. (He's been in an AZ ALF for 10 months). I find that a cheery reply keeps away the "Poor little you" looks of pity that I just hate. Now I'm trying to think of some remark that's about some other subject. Would the weather be a good one? Even if we were expecting a hurricane any minute I could say that the weather certainly looks interesting today, doesn't it.
I agree LoriRN. They don't really want to know. Too much information would "blow their mind". Unfortunately, I find myself doing much the same now...asking how someone is..I think it is a habit ingrained into our souls from childhood. However, now that I have been through the caregiver life - I now DO really want to know. I was caregiver for both my Mom and my husband for several years. I think that interest - I know have - comes through and usually friends will "open up" and talk. Talking is one of the most important things we can do - if we can find someone to talk to. I recently started a local support group for caregivers of spouses, at our local Alzheimer's Association. I can get them to talk openly in meetings but cannot get most of them to e-mail responses to my e-mails other than to say they enjoy receiving them. So frustrating. One of the ladies last month commented "I am a very private person, and it is hard for me to open up about things. She will talk at the meetings. However, I think frequent e-mail contact with others who understand what you are going through is one of the most important tools we have and it is free. Support meetings are usually monthly and caregivers need daily support. Joan's site here is proof of that.
PrisR, I also answered the question with "He is doing fine, or ok, or whatever". Fiblets are not only for our AD spouse and why make the few friends we have avoid us more than they already do. It is lonely, no doubt about that. Complaining to our few "friends" is not going to help the relationship. In the "after" most of us have to cultivate new friends and that is not easy either. Meaningful conversation is hard when you have been "out of the loop". Those of you who have been able to work at least part of the time - have been able to keep the thread of your life going and are fortunate you have that opportunity.
I give my welcome to all of you who have found this website...I'm sure you'll feel the relief i felt when you find some of the things you're going through others have been there and have survived this rollercoaster we find ouselves on like when I try to remind my DH that he really needs to brush his teeth and then to him I am the enemy or that his t-shirt has got white stuff on it because he should spray on his underarm deodorant before he puts his t-shirt on not after..or that he doesn't need to go out to feed the goat because she died 2 years ago I could go on and on...and then a day comes along and it is fine...I'm thankful for those days.
My coping mechanism (for most anything) is purely academic. Something new or stressful and I gotta study it to death learn all i can and then I reflexively start teaching it to other people.
Alzheimers? I have read up as much medical and social material as I can possibly absorb. And through the Alzheimers Daily News I stay up on the latest information :-)
Then I TEACH! When someone asks about my wife they get a mini lecture about her current capabilities and losses. I tell them about how I am coping and suggest some strategies in case THEY ever encounter AD. After a few minutes THEY either have some questions to ask or want to walk away(!) I do this around the office I have rooted out several closet caregivers (both AD and general eldercare) and been able to help them out. :-)
BTW LoriRN, the Alzheimers Foundation has a side organization Dementia Care Professional of America. (DCPA) They have for purchase a series of DVDs (produced by the state of Alabama) that are nurse training for dementia care.
Pretty neat! The first series is at the CNA/SNF level. The next is at the RN level. (6 hours each level) Nicely done the CNA set is basic care, but very informative. ANY caretaker could benefit from watching this level.
The RN level is challenging! I had to stop and replay many parts of it. You watch the videos and take a test and you become a Certified Dementia Care Provider or Specialist. (handy if you want to work in dementia care) If anyone wants some serious training on dementia care I highly recommend them. (Google the DCPA and you will find them) Jim, RN Certified Dementia Care Specialist ;-)
Likewise...thank you everyone for the welcome. My wife was diagnosed last month. She is 52 yrs. old, I'll be 46 next month. We have 2 kids, 12 & 15. Needless to day, this is very distressing. My wife was an RN for 31 yrs. After her diagnosis, she was told she could not work her RN job anymore.
Two groups seem to have some very special needs coping with AD. Couples (why you are here) and children.
Lots has been written about talking to young children about grandparents with AD but an underservered group are teenagers with AD parents. How embarrased we all were as teenagers to bring our friends home to meet our parents. If you have a parent with AD I cant imagine how much harder that would be.
In case you have not found it already, I suggest sending your children to explore the Alzheimers Foundation (AFA) teens section. They are making a real effort to help that group cope with their own special problems. (There is a link on Joan's home page) The AFA teens works to encourage peer discussion which is so necessary at that age.
Another undiscussed area of AD Dx happens among us younger types - Job Loss - AD is statisticaly a disease of the elderly. An age when most people have long since retired. When symptoms hit during working years, the AD person always loses their job, career or business. The loss is always for 'incompetence'.
My RN wife was fired (the final time) for repeating medications - "Sir, it is time for your pill" "I already had it" " No you didnt". Good nurses dont do this, and she was an excellent nurse!
Losing a career that you have mastered and losing it for incomptence is a loss that must be grieved over. Do not blow off this grieving stage. The changes that job loss brings must be delt with and to imply that it is a loss you do not need to cope with will come back again as additional pain. Additional pain is not something any of us need!
It took a year for my wife to be able tell people she was a RETIRED nurse. There was always that hope she could return to the career she loved.
To the new members mentioned on this thread: Welcome! Somehow I missed out on contributing that.
Terry54: I am retired from the Social Security Administration; your situation with Medicare for your husband is a shame. If you want to pursue it, I recommend speaking to an attorney who specializes in SS Disability cases. Usually they will give you a free consultation; I would ask about the possibility of getting Medicare awarded retroactively due to the mixup and special circumstances of AD. Your post said you contacted your Senator's office and submitted documentation, but there is a formal appeals process that starts with a request for reconsideration and then if that's denied, a hearing before an administrative law judge follows. All depends on how far you want to take it.
Also, if you sign him up for Medicare after the initial enrollment period, there is a 10 percent increase in the premium for each period that is missed. That's another reason for getting this straightened out. Good luck.