I invite you to log onto the home page - www.thealzheimerspouse.com, and read today's blog. Make sure you read the note in red at the end - that the blog and its conclusions DO NOT apply to EOAD. That is a separate issue and a separate subject.
I would like to know if you agree or disagree with my blog conclusions. Of course, I would like to hear from those who agree with me, but I welcome those who disagree to present their case. I really do wonder if I'm on the wrong track.
Joan, i whish i could say it differently but i tend to agree with your analysis. those non affected or non needy of personal input just dont seem to grasp the state of devastation this disease reaps on the family and caregivers and like you say really dont seem to welcome the implications of yet another terrifying disease in our society. the public in my opinion for this purpose would be intended like you said to those out there who DO have a family/friend with the disease and need the counsel and input from those in the 'trenches'. for these folks the experience and handson expertise is essential for them. i doubt those in govt- with all its encompassing with the issues at hand- even though they are aware this will become a major factor for our healthcare systems soon in the future are handstied with other more urgent problems right now. i hope my insight is incorrect and after the documentary is exposed to millions things get a lift for the better with this new knowledge out there. we'll have to wait and see. divvi
I agree that most people are not interested in specific health issues unless and until they are personally impacted. However, I somewhat disagree that EOAD is that much different. It seems that many dementia patients and their spouses went through the same "years of misdiagnosis, incorrect medications, confusion, and marital discord" cited for EOAD -- we did with my husband's FTD. A dementia diagnosis is devastating regardless of ones age or place in life. What needs more emphasis is the issue of caregiving and the loss to society that it brings. This is one place where EOAD does take a greater toll in that EOAD caregiving more likely impacts those in the prime of their work and childrearing life.
I'm afraid I agree with you Joan. Just with my personal experience of trying to talk with other caregivers, who are in denial, or hoping that not talking about the disease, that it will go away. I have mentioned before talking with 4 caregivers and inviting them to e-mail me or call me and not one of them has. I do have 2 other local friends who are facing their problems head-on and sharing. If someone local called me or e-mailed me to discuss AD, I would welcome and pursue the connection.
I am going to go to the next Alz. Support Group in June. I talked to them this morning and they said they had a lot of people attend and invited me to come. This group is sponsored by the local Hospice Group I had for my Mom. I thought that was interesting. That was the phone number to inquire about the group.
I lurked for a few minutes this a.m. and then posted something that was too long winded in response to the intellectual novice thread..or was that virgin.. Anyway..am back for a few minutes and really believe that unless someone has a cause or a need to become better informed,,I don't think its likely that the general man on the street will pick up newspapers, or watch programs about this disease and its effects. Wouldn't we all much rather run away from it? yikesss..
I can only thank those who've been tutored by first hand experience and those who have that benefit, who are courageous and energetic ENOUGH to meet with lawmakers and health organizations and everyone who will listen. If our statistics (just on this site) are correct...it would behoove every nursing program, every medical school, every health care center to be more than just aware, but receive hands on training with patients at every stage of this disease. I do hope the general public watches the HBO presentations. I wish every church, library, and local medical clinic, could have a copy of the DVD. The doctor gave me 4 sheets of information he downloaded from a website..when we walked out of his office. I felt like he was completely unequipped to provide guidance..he did mention the Alzheimers Association..that was nice.
Joan, Divvi and Lois, I agree with you. I know a couple of women that know my husband has been diagnosed with AD, and whose husbands are taking Aricept and Namenda, and yet they DENY that their husband and mother have AD!!!!! Their husband & mother are getting lost, their personalities have changed, they have difficulties finding the right words, etc., but they keep trying to find something else to blame it on!!!! I wonder why they are in denial at this late stage!
I have sent out word to a lot of people to watch the HBO project. I don't know how many will actually watch it.
Judy. you posted while I was typing, so I hadn't read yours! You are right...
The problem is that most people will be affected in some way by this disease, and won't recognize it. Yes, unfortunately, you are right, those who are yet untouched are not interested.
I think having more information for others new to this disease would be really, really helpful. I’ve been to short informational seminars and support groups, but the thing that helped me the most was when a hospital in a nearby town had a day-long meeting about caregiving and dementia. The lady who ran the meeting was the go-to person about dementia for the hospital, the local nursing homes, and the whole town. She brought with her a lady who had cared for her husband until he died. Those of us who attended got to spend the whole day with these two people, and after they gave us the information they thought we needed, we got the rest of the day to ask questions about anything and everything. They even ordered lunch in so we wouldn’t have to stop talking! I can’t tell you how much this helped me, because we were only about six months into the diagnosis then, and I had so many questions I thought my head would explode.
Other than this one time, I’ve never seen a similar program anywhere. The Alzheimer’s Association has occasional short meetings on a particular topic, even all-day caregiver events, but they are more structured, and the opportunity for asking questions, especially ones not on that particular topic, is limited.
Last year I got an opportunity to speak to about 60 people about caregiving, and one comment that I got afterwards is that they hadn’t realized that it was such an ongoing, long-term problem. They thought it only got difficult right before the person died. Maybe that’s another reason people don’t seem concerned—they don’t understand that caregiving goes on for years (and years) before we lose our loved ones.
P.S. I can understand not wanting to learn a lot about a disease that does not impact you or your family or friends. What I can’t understand is how somebody can have someone in their own family dying of this disease, and not do one thing to learn more about it. A lot of us are dealing with that.
Thirty years ago I worked w/a woman who'd come in on Monday & tell me about her FIL w/AD, how he didn't know them when they'd visit on the weekend, etc. I didn't learn a thing from her, didn't care--it could have been any strange condition. That's why I always cut people slack, they can't possibly understand--even if you explain, paint a picture, do an HBO special. Years ago I was on TV w/my DH, was offered a movie contract of our story, signed w/an entertainment atty, a treatment was done, the whole thing, and no one would buy the story. Everyone said AD was a financial loser--and I know that's true. Who watches this stuff? I never would have. I have videos of DH & people walk out of the room, can't stand to see it. I wanted to teach the world, knew I could do it, and I suppose I've made some impact, but the world does not care. You cannot get your mind around the devestation unless you have lived it. It defies belief. So I wrote my books, do my monthly column--I have no idea if anyone reads it, altho the editor is pleased. The elderly want to read about cruises, gardening, soc sec, other health issues--not this. I see more awareness since I began, but I believe because it's impacting the boomers, either they are caring for parents or have it themselves and there are so many of them, it's becoming more apparent.
Today I have a good life, I'm happy & content. I've been at this since 1993, and have no plans to stop. DH left years ago, but my heart is still raw. I will not watch HBO, I cannot go back there. If I've learned anything from AD, it's to protect myself.
Jan, you really hit on the nail. I can't understand why some people don't do anything to learn more about the disease either. I always feel better when I understand what is going on with my husband. I will even ask the aids and nurses about something that I am seeing him do.
I do believe that there are many factors that contribute to people not choosing to learn more on their own about a disease. To name a few, personalities, comfort searching for information on the internet - I know many older people who do not own and are uncomfortable with technology, belief that their doctors will tell them anything they need to know, etc. Some of them may even be too worn out to find the energy to search more information. How about education level? Denial is also another reason.
Later this month I will be starting going to a program put on by the Maine Alzheimer's Association titled: The Savvy Caregiver". This "assists caregivers by providing the knowledge, skills, and attitude essential for successful caregiving". It is a 12 hour course, provided in 2 hour sessions over 6 weeks. I'll be interested to see if I learn anything. I hope so.
I agree that most people do not want to learn about a disease unless it affects them. I do think, however, that there are many people touched by someone with AD like my sister's mother-in-law, my friend's neighbor, my husband's friend's mother, our neighbor. The more we tell people we know about our spouse's disease, there are more people who may be educated. At our Alzheimer's Association group, the leaders tell us about people who will not say the A word, who will not even meet them at their office. There is still a great deal of secrecy or " cover up" even in these days when everything is out in the open. Is this the last taboo?
Many people tell me that they gave my name & phone # to someone whose LO has just been dx'd. They rarely call. They buy them my books that are never opened. I've been told of at least 2 families who have never taken LO to a doc, altho it is evident they have AD. There is stigma, embarrassment, denial, fear--oh, lots of fear, well founded--and if no one says the "A" word it might just all go away. We are fighting an implacable enemy, but it doesn't matter, we're more implacable just by virtue of our having been thru it.
Joan-will you please stop taking the words out of my mouth. After streaming the HBO project I told my friends that I doubt any one not touched by AD would spend 4-5 hours watching a program that does not pertain to them. You are 100% correct. The public still doesn't know that the disease can attack any one at any time. For my part I seek out spouses of AD before they even realize the help they will need.
I agree with you, Joan. Also, at this time with the economy in the basement, people losing jobs, etc...so many people have so many OTHER things on their plate to worry about. And human nature being what it is, they had rather see/hear shows, etc., that are more uplifting rather than depressing.
I agree and disagree. Except for educating the doctors, and most of the ones I've dealt with are with it, I don't see that Early Onset is a different disease. I don't care if the patient is 40 or 80, the caregiver is going to be dealing with pretty much the same issues. Only if there are young children in the house is the situation different, and there could be young grandchildren in the home of the 80 year old patient just as easily as in the home of the 40 year old.
I agree that we need to educate the caregivers.
But, as I've said before, all of my daughter's friends are dealing with parents, grandparents, aunts or uncles with the disease. They are in their 40s and 50s and are in some cases the primary caregivers, and in other cases secondary.
I can't remember any family members with Alzheimers. That was one reason I was so in denial about DH having dementia. Also, I can't remember being around a person non-family with alzheimers.
I've watched two of the streamed parts. I agree that most people untouched by AD will not have the interest or the patience to watch these. I hope, however, that every politician and health care professional, (medical and mental,) take the time to watch. In fact, I am going to email my state and federal representatives immediately to encourage them to do so.
Although there are most definitely different concrete issues for EOAD (finacial, housing, etc.,) the emotional issues are so intense and broad that I do not seperate AD from EOAD, at least not yet. I rarely know the age of a poster on this board unless I go to that thread and look and I have no trouble relating to every wonderful caregiver here.
Thanks to those of you who do all the hard work in educating others to this terrible journey we are on.
I agree with all your conclusions Joan. Your thoughts are very logical and clear. You are right about "Who Cares".. The way ad is portrayed is usually in its mild form, and I have yet to see the agitated and angry patient....The poster boy for ad is someone in their 80's, with mild forms of forgetness and I think that most people believe that is all the disease is...they do not see the other more serious symptoms.... If I made a documentary about "Colostomies", how many people would care to watch that? (I mean other than Divvi).. Who can understand the embarrassment of losing a bag at Walmart, or forgetting to put one on before church....(again only Divvi would understand... I too differentiate between ad and eoad, and though both are terrible, I am prejudiced because I am caring for eoad... I was never interested about Muscular distrophy, cerebral palsy, down's syndrome, cancer or heart disease, and my awareness only happpened if one of these struck close to home. I suspect that I would feel the same about ad. National awareness helps to put money towards research, but I think the majority are tired of giving without achieving results....take Jerry Lewis and his telethons...are we any closer to solving muscular dystrophy?? If so, I must have missed the headlines...same with March of Dimes....etc etc. If ad were contagious, I believe a cure would be found in a few years... Public awareness can only help to further understanding of ad, and give some support for the caregivers.... I think we should set aside a national ad day.....like on april 15........opps we forgot to pay our taxes......
I agree with you all. I don't think people really care about other people's illnesses. But look at us: we are so wrapped up in AZ that we don't really pay attention to the many, many hurting people out there with other illnesses. AZ will get attention because of its COST to society: most of the people affected are on medicare/medicaid (I would guess unlike those with cancer or MS or MD) ; so it's going to be a big big cost to society as we all age - the only other group I can think of is the poor returning vets with battle injuries and traumas, and there are fewer of those than AZ patients.
I can relate to the colostomy, phranque. My Mom had one 10 years and the last year I had to take care of it for her. She didn't have AD but old age decline and memory. The last couple months she would take her bag off if I didn't tie something around her to keep her from getting to it. If anyone here is dealing with a colostomy and has any questions they can e-mail me. My address is in my profile.
Please, let us not get discouraged. Maybe we do not help the masses...but if we get through to those that are seeking help, we have done a wonderful thing! Bettyhere, your book was my first practical book and I devoured it. I had to borrow it, but read it twice. It was a great help. Thank you for all your work in writing it. Not everyone will get involved with fact about AD, but they do not get involved with other things either! Some people just skim through life. But those that need our info and experiences will seek us out if we are available. Loke at the sucess of this website. We all were searching for info...and we found Joan's contribution to AD information. Let us be available.
Thanks for your offer of support...I'm now a pro at colostomies, and so far my mom can still manage that ok, but I am trained and ready to compete with Divvi....But I am grateful that I will not have to help my mom get on the toilet and I do not have to wipe her butt........That in itself will retain her dignity....nothing worse than not being able to wipe yourself.... I bought many rolls of duct tape in the event that my mom decides to take her bag off....also working on a model pumping lift station, same as used in sewer systems.....Isn't life fun!!!!!!!!!!!!
I agree. From my own experience, before my wife was diagnosed at age 59, I was guilty of not taking the disease seriously, referring to friends with a memory lapse as having a "brain fart" or "maybe he has Alzheimer's" ... ha, ha. I considered it a disease of the aged and would not have wanted to watch a documentary. Like learning more about the holocaust ... why would I want to spend valuable time doing that.
You are so right. That is one reason I started "CAROL'S BLOG". I sincerely wanted to inform my friends as well as my family. I have gotton a few verbal coments from some friends but have not received a written "comment" from any of the friends except other AD advocates. I still hope that they at least get some understanding for those who visit my blog. I hope they will come back later but probably not. They just don't get it.
I agree that a dementia diagnosis is devastating, regardless of age. However, the younger the diagnosis comes, the more it disrupts one's life. Based on our experience, here are some of the differences between young onset dementia and later onset:
--Generally, people with young onset dementia are still working--a career is a huge emotional loss, second only to driving. Aside from the financial impact, there is the issue of what to do all day. Younger people often aren't appropriate for senior centers, everyone at adult daycare is much older. Staff members at adult daycares haven't had many younger people as clients. Some don't believe that the individual really has dementia--they attribute behavior issues to a bad temper. (Can you believe it--this actually happened to my husband.)
--Due to their age, most friends and family are still working, cannot spend time with the disabled individual nor assist the caregiver.
--Social security isn't in place yet; approval for SSDI may be a protracted battle; Medicare isn't in place yet, and health insurance may be lost with the job.
--A sudden, unplanned retirement puts additional burdens on the caregiver. Decisions have to be made regarding how a lifetime's worth of savings should be converted to retirement income, possibly without input from the disabled spouse.
--The couple hasn't downsized their home yet--if the disease hits at an older age,there's a good chance that this would have already been done.
--As someone mentioned above, there may still be children in the home.
I think joan is correct. And I think a big reason is the lack of connection. If someone has a connection with the disease, they'll want , or at least accept, some information, training, etc. If they don't, they won't. Sometimes the connection is close (family member, friend), sometimes not. If not there is some other connection--look at the appeals to "support a child overseas, donate hair for wigs fo kids with cancer; and yes--Jerry Lewis' Telethon. One huge thing I see as a difference between these and Alz is APPEARANCE. People may not have a direct connection to these organizations but their appeal is VISIBLE. Alz is sekdom visible for long. Our LO's 'look fine', until they don't, and by then they disappear into our homes, NHs, and then they're gone. There are a lot of invisible diseases and that does make it harder to garner understanding and support.
Oh, and I can't resist letting you know, Phranque--There have been huge strides in getting to treatments and getting very close to cures for the Muscular Dystrophies and their related diseases. On the telethon, between the entertainment segments, and the segments on families dealing with the various conditions, they have segments about the medical progress being made. I know about this because they've been involved in backing the research that allowed me to get genetic testing to ID my particular type of CMT-- and further, we were able to have my immediate family matched to my findings to verify that not only do none of my siblings have the error, neither does my daughter--a 50/50 genetic chance. That's not a cure for me but I'll take it--since if any had the error, they'd have the disease--even if it manifest itself later in life. Again, my point--I'm connected so I know more.
When DH first began having obvious subtle issues, he was 61. Too young and too 'healthy' to fit the customary idea of Alz. He is 70 right now. That was just 10 years ago. I think this is the reason I am so amazed at the numbers of EAOD loved ones listed here who are much younger. Consider the notion that this number represents only a tiny fraction of the true number of EAOD cases right now. Thankfully there IS more information 'out there' today.. Largely because of writers and researchers and public speakers who have and are still providing care for their loved ones. The influence of this disease on the population has grown 'enough' I guess, that more efforts are being made to inform the public. I watched some of the HBO segment last night..Bless those grandkids.. what troopers they are!
I agree with Marilyn, since my husband is 58 years old, I am having touble finding a supplement for Medicare which he will be eligible in July. So far only Humana Advantage & AARP are the only ones I have found that will accept under 65.
I send out regular e-mails to family and friends on my husbands status/condition. I have gotten several comments back and about how they never knew so much about the disease until I started writing about it. I have described some of the nursing home/doctor lessons I have learned, written explanations on the drugs and their purpose and some of the things I have learned in caring for him. Some of it is applicable to any hospital/nursing home situation. Some of it is AD specific. I have also described some of my struggles in getting changes to happen for my husband. Maybe they won't remember much but it is a seed planted and there may come a time when they will be talking with someone else and be able to pass along some of the knowledge or they may have the opportunity to use it themselves. Many of the things that we have all learned in caring for our loved ones are very applicable to other care situations.
I do agree with Joan, the general public and also some of our own family members are either not interested or just afraid of what they might learn. I have yet to ask our daughter if she watched, I will find out but I would venture a guess that the answer will be NO.
It will be hard to educate the public until half the baby boomers have the disease themselves.
A friend, who has only known my husband since the dementia, and who's been sweet to him but not really involved, called me today and said she'd watched something on PBS which seems to have been talking about caregivers, and she realized she'd never offered to do anything for me. And now she was offering. What could she do?? Well, she's a dear sweet woman, a slight ditz, and she makes me laugh.
So I said,well, not really much.. As we talked (also about a newsletter we have to put out) I was walking around the house giving my husband directions about going into the kitchen for lunch. No, use your walker. That's right, now go to the KITCHEN, not out the door. Now stop in the bathroom. And lift the seat. No don't leave yet, you haven't DONE anything. PEE! etc etc. He kept going whichever way was opposite to what I said, not being contrary; he seemed to just be mis-wired. She said, omigod, I had no idea!! All I could think of that I'd really like was if someone else would take over making sure he'd wiped after he'd pooped, but somehow I didn't think that was something I could blindside her with!!
You might say, "I really don't think you wnat to do what I do to care for my my husband...but if you are really serious, you might make us one of your delicious casseroles the next time you make one for yourself!" ...
I think that would be like going out to dinner, if I had food I had not prepared my self. I am told to LET others help me, and I am trying to learn how to do that. So for I have responded exactly the way I suggested above...and guess what? Neither one brought over a casserole. oh well..............
I LOVE to cook; she doesn't really like to, she's an eat-to-live person who nibbles.. I truly don't want her casseroles. Sometimes when she visits I count her in because I usually try to make enough for 4 even when only 2 are eating, then have the rest at lunch, or freeze it. She has a tiny car so she couldn't take him out, plus she's a nervous, stick-shift driver. I know, I'm sounding like Joe now saying I'm the only one who can take care of my husband, but... I CAN ask her to pick up something at the store sometime...
briegull-- You've got it. There are always things that need doing, and just because you are able to do them doesn't mean you should be doing them. Have your friend run a couple errands and you can do something only you can do--2 jobs done at once. Takes the pressure off. If you keep Do Lists, when someone offers, or if you're comfortable enough ask to have something from the list done.
The to-do list. I love it. I am always being asked if I need help and can never think of anything. I do think those that offer really do want to help. I will be putting together a list. Thank you!
briegull, there are things you need. And from the sounds of it she might even already be doing the big one. She calls you on the phone. She comes to visit you. And now, that she seems to have discovered how bad it really is, you can actually TALK about what is going on to a real live person.
And I totally agree about the to do list although I've not actually done that myself yet.
In the past I've asked for someone to come with me to the car wash to teach me how to do it. Turned out I didn't need him for that, but when I started going nuts because I thought the car was moving (it wasn't, the machinery was) THAT was when I needed him. He convinced me I was OK and the car wasn't going to crash. I've used that car wash additional times with no problem as a result.
And I needed someone to replace batteries in the smoke alarms last month. Again, I asked and someone came to help me.