I know I blame the stress (or a big contributor) on my body falling apart: my neck, my knee, when I fell 3 years ago tearing my rotator cuff, weight gain, depression. Because of my left knee and right big toe walking is painful. My summers I am stuck inside due to the hot flashes from h##l as a side affect of my radical hysterectomy 4 years ago stuck inside.

We all have our list which will affect us all possibly for the rest of our lives.

I found that the health impact on me, the caregiver, was not recognized. After all, how bad could my health be when my spouse had Alzheimer's and was slowly dying inch by inch. I felt guilty when I had to tap dance and rearrange the deck chairs on the Titanic just to fit in a doctor's appointment... Basically, I stopped going to the doctor, or the knitting group I belonged to or the hair salon, or anything else that I would do normally because I disappeared and ceased to exist, became invisible. No, I am not a martyr, just the first degree caregiver at ground zero of the Alzheimer's grenade that got lobbed right in the middle of "our" life.

At the beginning of the journey with my husband I was very healthy, a runner, ate very healthy, non-smoker, not on any prescription medications, didn't often see a doctor other than the yearly woman stuff. Boom, your husband has early onset Alzheimer's disease and that's the end of life as either one of us would know it.

He had to stop working, obviously that was one of the first indications that something was "off" with him. I was and am still working full time, carrying the insurance, and paying half of everything as we always had in our marriage, now I am paying only for me after his death and I am trying to recoup the loss, including the health woes I suffered over the last 8+ years and the financial hit, it's not about the money, but really it is, you see, here in my world it takes money and not the feel good sayings you see on the plaques at the card shoppe.

Seems like I am running out of room, will jump to the next comment box and continue with my list of "health issues"...

Lady limbo, I wouldn't have gone to the doctor at all (which means I'd probably be dead by now) but my daughter, who wanted her daddy well cared for BY ME, sat me down and told me that the caregiver has to look after themselves, and she hounded me until I had made a doctor's appointment .
Sometimes I wonder if life would have been better if I had ignored my health issues, died first and left the caregiving to my children.

Thanks for highlighting those links Lindylou. I finally got around to reading them. The NIH article is the first I have seen that really gets what we.talk about here - like the effect of hyper vigilence.

Was disappointed to find no recommendations, but I think there is an increase interest in the healthcare community. Witness the team I just found at the VA geriatric clinic. My husband is the only one qualified for care with the VA but the geriatric clinic cares for me as well. I was just thinking about it the other day though. I am not sure what to ask for. I have a.social worker and a psychologist I can call, but right now not sure what to do with that access.

Anyway... the second link was interesting, labelingit as a syndrome. But it has.a.link to a family caregivers.website that must have been coopted by a FERTILITY clinic of all things. ROFLOL.

Charlotte, From my own personal experience s the chemicals on wipes can sometimes irritate tender areas. Cleaning well using just water and then using prescribed meds worked for me. Took a while to discover this.

You go girl! You are right about not being books or blogs out there of people that live on a tight budget, one step from financial ruin. There are plenty of stories out there from people who had money, who had the resources to help them survive and not sink, but who still might suffer physically from the stress. But for those of us on the lower financial ring, those who have to rely on Medicaid to pay for placement, those who don't qualify for Medicaid but can't afford placement or in home care - there are few.

Charlotte, somehow I missed your earlier post from a week ago. I was thinking that handling his crotch problems might be being traumatic for you. I have been having difficulty with all the exposure to his penis and balls, but not as traumatic as that, Charlotte. And, yes, I am military too, but I was peace time. No PTSD from my service.

Ladylimbo, I think the book is a good idea. When I started this journey most stuff I saw was so overwhelmingly warm and fuzzy it made me want to throw up! They spent to much time telling me how to make sure to never criticize the poor dear man, and make sure to smile all the time and be sure to touch in friendly ways. Oh and be sure to find ways to keep him engaged and happy - by all means, for sure, for sure. Nothing about really how to deal.with the overwhelming amount of poop, or the anger and physical and mental abuse. Lots of stuff out there about preventing or punishing the abuse of the alzheimer person. Nothing about dealing with the mental and physical abuse of the caregiver.

Speaking of impacts on caregivers---does anybody else have nightmares about things connected with caregiving? I woke up this morning with another bad one. It just seems to suck all the oxygen out of the day when it starts like that. Sometimes it's just a bad dream. Other times I wake up still crying from the nightmare. The only explanation I can come up with is that I'm so overwhelmed with the whole situation that it bleeds into my sleep. As though it's not bad enough to have to deal with all this during my waking hours...

Hi ladylimbo, I think any book or article that addresses financial problems would be a great contribution. There are so many ways that people suffer financially as a result of this disease. Some people start out with the wherewithal to just about cover basic living expenses but dementia wipes out that ability. Others are already struggling and when dementia hits, they have no resources at all to draw on. For those of us who live in the USA, the official policy seems to be, "You're on your own." If you happen to qualify for some kind of public benefit, such as disability or veterans' benefits, you get a little help, but if you don't, forget it. The books I've seen that talk about finances usually describe what is available without pointing out what is not available and what that means for people who are either on the edge or are broke to begin with. Why is there no political movement to call attention to the plight of people in this predicament?

Ladylimbo, Paulc is correct. if you have the ability, time and money to try and get it published that's fine. The subject matter is right on. You can find magazines/books etc on how and where to find contacts for publishers, as well as what type of subject matter they are looking for. There are also very specific requirements for submitting a manuscript. Your other option is to self-publish, amazon is probably the cheapest and fastest-- you still have to do the work, or hire someone to format it for you -- but a good way to see if it's something that's possible. Downside is, self-published books rarely sell more than 50 copies - but now with kindle so easy you could possibly quickly exceed that. Price is also a problem with kindle, people are looking for the $2.99 type rather than the $39.99 type.

If you are looking for a place to get your information out, for people interested, and possibly for an outlet for your own experience -- self publishing is great. If you want to make money from your book -- you will need to present it to a publisher, possibly an agent first, and wait :) A manuscript they accept may or may not be published for a year or so, and if it doesn't sell well, there won't be a second reprint. Are you ready - or do you even want to promote your book? Rarely will a publishing company do any promotion for an unknown author. If you self-publish a manuscript, very rarely will a publisher look at it -- just a quirk in the business world. So good to know if you want the experience, to get your story out, feel a book like this is needed, self-published can be ready as fast as you can type and format it. If it's well accepted, you can then do an in-depth manuscript and submit it to a publisher with more credibility. In the industry they say your first book is a business card, just to get your name out.

Maybe more info than you wanted lady limbo but went on the idea that you sounded serious about getting some info out in book form.

Another avenue to explore is to do your initial work with amazon, very cheap, you can also get an editor/book cover artist/etc there for a fee, then once you have it ready to put on the market, publish it with another company like Lightning Source. Originally they were the ones who had access to world wide markets/ libraries etc -- also now Amazon does for an additional fee. It's a bit of a status thing, some people see the amazon trademark and dismiss anything - others are simply looking for information. A good website of your own, if you have the time to work with it, can be a good access too.

Going to add a comment on this thread since I found lots on the internet. Seems like the experts are concerned only with how things affect the spouse....and things that the caregiving spouse can do to make life easier for the one with ad. I sometimes want to scream...but what about me????? A book that covered this would be helpful, if it could get to the people who really need it. Generally books won't get to libraries, although trying to get them out to associations that claim to be for people with dementia would be a good service. I think maybe the act of writing the book may be of help to you especially, that technique is often suggested. Offering it as a free download would probably be the best way to reach the ones who really need it. I tried to keep a diary but was too hard to keep dh from finding it..same with the computer. Any hint that he may have anything more than "a little memory problem" will set off fireworks.

I wonder if anything could cover all our situations? This disease, and related, affects individuals so differently that each one of us who is responsible for their care has to forge our own path. It has helped to be able to vent on this forum - may not be a solution but I have learned a lot. I've found much of the available information is related to caring for elderly parents -- which is a whole world away from caring for a spouse. The sticky, I believe that's what it's called - that says Let's Have Some Humor, is great. Sometimes I sit in the evening and read through a few and giggle to myself, occasionally reading something to dh. This life is seriously depressing much of the time. Have decided this is the time I will get my painting area finished upstairs. I must have something to do in the evenings that isn't geared to taking care of dh. He won't like it, thinks I should always be sitting next to him watching whatever tv program he happens to have on, and he can watch the same thing over and over and over because he never remembers it. Now he's on a kick with old, dumb, sitcoms which he managed to find. I go crazy with these on - he doesn't watch them, nor remember them -- but If I want to watch something else or leave the room, it's a battle. I did find some earplugs which work OK, but truthfully, don't want to spend every night sitting with earplugs in. Soon winter will be here again and we have so much to do before the cold arrives when we are stuck indoors. I'm just going to make a decision and let the cards fall where they may. Fortunately, he won't remember the battle for too long - even if it happens over and over - it's just me that builds up frustration.

One thing I find myself facing is problems I've never had to handle and have no idea how to go about it. Seen many of you say the same thing. Maybe a section where someone could post a problem and those who know how could respond with some suggestions. Often I find myself in the position of not knowing the right question to ask to get the right answer -- even knowing what to call a part :) i.e., our truck has to be licensed next month and will require a safety inspection. I know there are problems that will most likely prevent it passing and will need to be fixed. We are already fighting about getting it in -- he has refused to take it to the shop many times - even when I knew something was wrong. We will need the 4x4 come winter but again, short of locking him in the barn and just taking it in and saying fix it -- I don't know what to do. I'm aware I spend more $$ sometimes since I don't know what needs to be done, nor if it's being done right. i.e. the shower, have had two plumbers out --last fall they replaced cartridges that were too old to repair and were leaking. Earlier this year, another one found a leak that had been overlooked, not from the shower but the back of the toilet. Now, when we were finally ready to lay new flooring, I saw the leak was still there. It's one of those things that you don't see if you're not there at the time. Plumber out again and found the real problem, but to do it right is going to cost mucho dinero, so do I go with just "good enough" and worry about it later?? Sorry folks, guess this is one of my mornings to feel sorry for myself.

You are so right that most all the articles on caregiving are focused on what we can do to make life better for the one with dementia, not for us. Or if there are suggestions for the caregiver they are assuming you have a physical support system (like family or friends) or you have the money.

Yes, learning to fix things or finding someone to do it or even diagnosing the problem can be a challenge. Many places still treat women differently than men too often trying to take advantage of them. In Dec 2010 when we headed to AZ for the winter our tires on the MH were fine when we left. The California roads were so bad the tires took a beating. We stopped in Needles to get gas and the guy said the tires needed replaced. Yes, they looked bad but we only had about 150 more miles to go. The guy badgered me about needing to replace them all and hb was no help. I was hot, tired and almost in tears. Of course I broke down and got them paying almost twice what it would have cost me normally. It was then I decided I would work hard to never have that happen again. Over the last 8 years I can get real nasty when I think someone is taking advantage of me. Use to be when I would drive into Les Schwab to have tire pressure checked on the car I would have to wait sometimes up to an hour. When hb was driving they did it right away. Now I don't park and go ask - I pull right up to the bay where they do it at so they can't ignore me for long.I have to say the mobile RV repair guy we have is always fair. Maybe it is because he relies on word of mouth for work and he respects me and himself. With the latest problem with the car, when I had to return the next day I was not as patient or nice to begin with. When the guy came to tell me the problem and options I spoke with knowledge and authority and was treated with respect. Boils down to: I will try hard not to let repairmen walk all over me, take advantage of me or treat me less just because I am a female.

marche - you are right in it could be something you never suspected. Living in an RV you can have a leak which can be coming from an area totally away from where it shows up.

Hb has done that for a while when someone ask if we need help - ask her, she knows. Then they treat me a little different.

What would we do without the internet and youtube? My problem in doing things like on the roof is my weight. If I could get down to 200 I would not worry. There have been two men at a time up there - hb and friend - equally about twice what I weigh but I still don't trust it/me. I so hope once he is placed I can find the discipline to start loosing weight. I won't having to buy food and cook for him as an excuse.

Boy, my grammar or spellcheck is getting worse, LOL.

Good morning, ladylimbo, and it is a good morning here, sun is shining, horses are grazing, DH is still sleeping...and it's easy to think things are ok :) been thinking about your book. I've been asked to co-author a book about an old murder that took 15 yrss to solve. It's our accountant and Hes got a lot of information as it's been an interest since it started. Although I'm in limbo over it :), the truth is, my answer will be no. I'd love to do it but the time spent in research and verifying facts before you ever put pen to paper would not be close to possible in our situation.

When you're thinking about your book, you might write a small series. Your own life and maybe the early years with your husband. Maybe the next installment might be where your journey with ad began and the initial process. And the third installment, being the journey.... maybe to the end. My point is, you don't have to do it all at once. Maybe start with the story of your life - while you can still remember the details, make it a book in its own right. Doesn't have to be long, remember Louis LaMour, he could write an entire story in two or three pages. Go to Amazon and check out the self publishing area, don't remember what it's called, but there are several forums that might help you. Plus the process might give you a better outlook on what you're going through now. Just concentrate on yourself, the good years, the funny stories, the love story etc. you can put this into print for something like $25?? Been awhile since I looked at Amazon, but once you have a printed copy in your hands it will become real to you. Reading it will give you an idea of what's involved, what you're own writing style is. Will it be just for your family or something you'd like to share....once you decide that, you could move to the next phase. I'm rambling on I think - would be so much easier if you were sitting here:) is this something you really want to do? Or something you have in your mind that might never make it past the yellow pad of notes? Either is ok, but actually beginning the process is a great incentive to move forward. When you see how it actually reads - you have lots of options to choose from.

In my real life, as I call it, I was an intelligent - insert all good adjectives you like - woman. My first book, basically a textbook, took over a year of almost 16 hours a day to write. If you wait till the journey of ad is over, your abilities, not to mention strength, might not be as strong. I'd love to co-author this book.... but my final answer will be no. He is a good friend as well as our accountant for over 20 years, but has never been aware of the details DH and I encounter just to get through each day. What I could have done 10 yrs ago, maybe even 5....is gone. At some point I'll have my own life to live again, but I won't be the same person.i