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    • CommentAuthorlindyloo*
    • CommentTimeJul 18th 2018
     
    Charlotte. Thanks for the interesting post you submitted yesterday:

    https://www.huffingtonpost.com/entry/dying-at-home-family-caregivers_us_592738e6e4b0df34c35ab57f?ncid=engmodushpmg00000003).

    Imbedded in the article are two other very interesting articles on the health impact of giving care on the family caregivers themselves:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791523/

    http://www.familycaregiversbc.ca/wp-content/uploads/2012/12/Caregiver-Syndrome.pdf

    I think I will start a new page on this topic to prevent it from co-opting the monthly page. Thanks again, Charlotte.
    •  
      CommentAuthorCharlotte
    • CommentTimeJul 18th 2018
     
    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.
    • CommentAuthorbqd*
    • CommentTimeJul 19th 2018
     
    Charlotte, I had a stressful job and all it gave me was high blood pressure and a weight problem. Once my DH was diagnosed and I had to care for him at home, my health went from decent to terrible. Four surgeries in five years (none of which I could tell him about), two of these surgeries were for cancer, and I am still in the aftermath of the last one. So yes, we all have a list and if anyone tries to say that caregiving isn't hard on the physical state of the caregiver they don't know what they are talking about.
    • CommentAuthorladylimbo
    • CommentTimeJul 21st 2018
     
    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"...
    • CommentAuthorladylimbo
    • CommentTimeJul 21st 2018
     
    My continuation of health impact on the caregiver(s)...

    The list of ailments that I developed (remember they didn't matter because I wasn't the one with Alzheimer's, anything besides that was nothing to be bothered about). Here we go: Panic attacks, anxiety attacks (different than the actual panic attacks), prolonged periods of lack of sleep, developed shingles on my forehead dangerously close to my eye that I didn't know what it was thought it was bug bites because I was cleaning out a shed so a week went by before I very selfishly went to a doctor who took one look and said I had shingles and if it gets into my eye I could easily go blind and why did I wait so long to come in - I didn't have time to tell him my horror story, I couldn't even take the meds for it because it was past 72 hours... broke my toes, wrapped them the best I could and walked around like Quasimodo for a month, inflammation so bad that my joints hurt like they were on fire, but I've saved the best for last: explosive stomach issues of the sort that required me to wear diapers. So, my husband and I were both in diapers. The only difference was, I was wearing them to work because when I would get a phone call my stomach would revolt at the sight of the number (from the memory care facility) and I couldn't make it to the restroom on the other side of my office. Or, when I would go to see my husband at the memory care facility, as soon as I went over the last speed bump that put me in the parking lot to the memory care side of the facility, EXPLODE, would walk in to the facility and use their restroom to put on a fresh diaper. There are other issues that in the mental department, I suffer from PTSD, how would that be possible, I was never in the military, I have three individual head-shrinkers that are in agreement... So, that's a very short version of my take on what the health impact is on a caregiver, not for the faint of hear is it...
    • CommentAuthorbqd*
    • CommentTimeJul 21st 2018
     
    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.
    • CommentAuthorbhv*
    • CommentTimeJul 21st 2018
     
    PTSD not just for military. It is STRESS. Rape victims, victims of child abuse, battered spouses, all kinds of traumatic stresses out there. The recognition it has received in recent years with the military has led to more effective treatments. And with the military being mostly men, doctors are much less likely to just pat them on the head and say "just another hysterical woman".

    For you it sounds like it is Post traumatic stress, now. For me there is nothing POST about it. But some of the ideas for treating it sometimes help. I took anti depressants for awhile, but got really angry about putting dangerous drugs in my system because HE is sick.

    I hope the Explosiveness has disappeared now. That must have been awful! I thought I was the poop queen.dealing with his explosiveness. Can't imagine dealing with both of us AND WORKING???

    Surely not for the faint of heart!

    I am sending bunches of virtual ((((( HUGS )))))
    • CommentAuthorbhv*
    • CommentTimeJul 21st 2018
     
    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.
    •  
      CommentAuthorCharlotte
    • CommentTimeJul 21st 2018
     
    PTSD - yes it is not just for military. Being a survivor of childhood sexual, physical, verbal and emotional abuse I can guarantee it is not just military. As bonnie said, it is reacting to a past traumatic event. I am dealing with my husband's rash in his crotch and testicles - actually have been for a while. The smell he now has and putting stuff on that area has triggered the feeling of when an uncle use to make me masturbate him. That is an example of PTSD. It is all I can do to deal with him and add to that his whining cause it hurts - says the medicine stings, for me to wash his scrotum and spread his legs to get in there. I want to puke just writing this.

    As for the toll - weight gain is now up to about 60 pounds since diagnosis in 2008 - 40 pounds was in the first couple years, held that for a while, 20 pounds after my hysterectomy, and 10 the last few months despite eating better.

    We just can't win!

    Bonnie, thought you were military too? Maybe I have you mixed up with someone else.
    • CommentAuthorlindyloo*
    • CommentTimeJul 21st 2018
     
    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.
    • CommentAuthorladylimbo
    • CommentTimeJul 28th 2018
     
    I am not sure which "topic" this post would best be suited for, but I have a question... I am very seriously writing a book about my experience with being an Alzheimer's spouse. Actually, I am writing a book about my life, and family history, it's been years in the making and I don't see an end to it anytime soon. However, a lot about what I write about is my spouse, leading up to his diagnosis, my experience with the doctors, legal issues, placing him in a facility, his death, etc... and how I became more and more and more invisible as his disease marched on. How miraculously I survived and am making an attempt at a new life and that there is life after the storm. Not the life we ever signed up for, nor would ever have wished for, but a life that can be satisfying and meaningful in spite of it all.

    The reason I am so convicted to write this book is because it is a book I would have given anything to have gotten a hold of when I was looking for "self help", information type books. There was tons of books out there, but they didn't speak to me. Many of them were more of a clinical nature, very sterile in their meaning, just more or less gave a vague idea of what to expect and that it could take 3 years or it could take 20 years to run it's course, wow, how do you chew on that. Then the individual stories of famous people who have had loved ones suffer and die from "dementia", I think there are some that recently come to mind. Let me say that anyone losing a loved one to dementia suffers greatly no matter what their status or wealth is, it is a horrific disease to witness. But, their day to day struggles are quite removed from mine. I had to continue to work and was always one phone call away from complete financial ruin, or emotional catastrophe, just making the financial adjustments when I had to start paying for the hygiene products (diapers) was enough to give me an ulcer... I also was wearing diapers, those of you that have read previous postings are well aware of some of my own physical ailments brought on by being an Alzheimer's spouse... I seriously doubt that the more connected famous people that I refer to, I doubt they had that dilemma. I just wish I could have picked up a book, written by a nobody, and read about how it was okay to pray for the quick death of your spouse, or feel the guilt of being resentful that my future was in a financial ruin category and I shouldn't feel that way because my spouse had this horrible disease and I was a horrible person for feeling these things. So, am I completely off base for pursuing this "book", I would appreciate feedback, I figured this forum would be a great sounding board for suggestions... Thank you...
    •  
      CommentAuthorCharlotte
    • CommentTimeJul 28th 2018
     
    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.
    • CommentAuthorJan K
    • CommentTimeJul 28th 2018
     
    That sounds exactly like what I would want to write about the disease. Maybe if there were more books like this, people would understand what this disease is really like.
    • CommentAuthorbhv*
    • CommentTimeJul 28th 2018
     
    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.
    •  
      CommentAuthorCharlotte
    • CommentTimeJul 28th 2018
     
    I will admit I do not read all those articles that show up on my FB wall about how to engage, how to keep them happy, how to entertain them, how to .... how to....., etc. I am not going to do all that stuff they say. I refuse to cater to him that much. Horrible aren't I?

    Oh the doctor said it was bacterial. I had gone back to the diaper rash cream and it was almost gone. Doctor told him to bath more than once a week and use the anti-bacterial liquid soap he gave me, then put the diaper rash cream on.
    • CommentAuthorJan K
    • CommentTimeJul 29th 2018
     
    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...
    • CommentAuthorbhv*
    • CommentTimeJul 29th 2018
     
    Yes
    • CommentAuthormyrtle*
    • CommentTimeJul 30th 2018
     
    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?
    • CommentAuthorpaulc
    • CommentTimeJul 30th 2018
     
    ladylimbo, I see two ways to go about publishing such a book. The first is to self-publish it, which means you are responsible for everything and distribution is likely to be limited. My father-in-law has self-published a few books. No guarantee of making a profit. He paid for an editor and did a lot of traveling (all local) to publicize his books. These days doing just a Kindle version is possible.

    If you are interested in a publishing house then you should look for a literary agent. I don't have any information on how to find one who accepts unsolicited manuscript, but you can start looking and write to them.
    • CommentAuthoroakridge
    • CommentTimeAug 1st 2018
     
    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.
    •  
      CommentAuthorCharlotte
    • CommentTimeAug 1st 2018
     
    and if you are not looking to make money but to help those in need, you can put it in PDF format and offer free.
    • CommentAuthoroakridge
    • CommentTimeAug 9th 2018
     
    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.
  1.  
    I had a toilet that leaked off and on for years. Had it reset, seals changed, etc. Finally an astute plumber said that it was probably cracked - a crack we couldn't see, but would leak. Sure enough, when it was removed it was indeed cracked. The kids used to stand on it to climb out the window onto the roof (this was before smart phones LOL) and probably landed too hard jumping back in the window.
    •  
      CommentAuthorCharlotte
    • CommentTimeAug 9th 2018
     
    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.
    • CommentAuthorbhv*
    • CommentTimeAug 9th 2018
     
    I have found lot of information on the internet. There are you tube videos showing how to do all kinds of things. I repaired my refrig at least four times. Had a leak in the toilet tank, thankfully visible on close examination, and found you can just replace the tank along with video showing how to. I can bring my laptop and pause the video as I go through the steps. Have also found online advice when it is best to call a professional and what type of professional to call.
    When I don't know the question to ask or what things are called I try to find a user guide or manual and many are available online. Sometimes can find the name of the part or troubleshooting guides. I haven't done it yet but will take some photos of tools and send to my brother to ask how to use it.

    When I call a professional I watch and ask questions. Some don't much like that but when I explain my hb has alz and I need to learn how to maintain things and when to call them they usually brighten up and share all kinds of knowledge. I have been pleasantly surprised many many times because in the 70s I had so many bad experiences of men trying to take advantage. If they don't like my questions, obviously I won't hire them or call them again. Even the young men seem to see the benefit of potential recurring business.

    But I did get seriously ripped off by the people who came to pump my septic tank. They didn't do the work as quoted on the estimate and used cheaper parts and they didn't revise the invoice. This was early on and hb was counterproductive in the whole thing. I didn't pursue it and really should have. Too late by the time I really realized how badly I was taken. Lesson learned.

    My hb has no idea he has a problem, but when I talk with sales people with bravado, hb usually just stands there. Even in Home Depot and Ace HW, he has actually told sales people to ask me cause I know what we need. Shocking every time!
    •  
      CommentAuthorCharlotte
    • CommentTimeAug 9th 2018
     
    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.
    • CommentAuthoroakridge
    • CommentTimeAug 9th 2018
     
    There is a lot of knowledge on the internet and I used to use it all the time, but we are on such limited internet now I rarely watch U-tube anything. My Dad was general contractor so I do OK on those things, cars though - not my thing. There are things I can do in the house, put up the rest of the insulation etc, but it's a fight with dh. He can do it!!!!, but he can't and trying to get him involved makes it worse, and he's always here so can't do it without him knowing. I have found lots reading the forums meant for contractors :) I'm trying to find people who I can trust and have confidence in their work. I wouldn't get on our roof for anything. It's two stories and a cupola on top -- that needs to have a board replaced. Found out when we got a leak in the laundry room, when the wind & rain blows from the south it drives it right in. Had roofer out to check leak, and will probably hire him to come repair it. I know those guys run all over this roof but you won't find me up there. We have such an unusual house, nothing is ever simple and many times even repairman aren't sure how to proceed.

    Yes dh will always defers to me when out shopping - it's at home or with repairmen we run into problems :)
    • CommentAuthoroakridge
    • CommentTimeAug 9th 2018
     
    Boy, my grammar or spellcheck is getting worse, LOL.
    •  
      CommentAuthorCharlotte
    • CommentTimeAug 9th 2018
     
    don't sweat it - we figure it out
    • CommentAuthoroakridge
    • CommentTimeAug 13th 2018
     
    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
    • CommentAuthorladylimbo
    • CommentTimeAug 26th 2018
     
    Hi all, I am still working on "the book", I find it to be a book that will apply to a small reading audience, which is fine, but the dementia picnic is one that wouldn't be understood by anyone outside of those who have been there. I have been through cancer deaths, deaths by suicide(s), garden variety old age deaths, and some that were completely unexplained...they all have their different set of circumstances save for one, that is the length of time that dementia can decide to take its toll on its victim and the ground zero caregiver. A few years to 20+ years??? What the crap kind of an answer is that...When I first heard those numbers I started looking up ways to commit suicide, literally. That would have at least forced the issue of when to place my husband, there would have been no option. Would it have been a good place like the one he eventually ended up in? I don't know, sometimes I wonder what the difference was anyway but that's another chapter in the book in progress...

    My post will be short today but one little quip I heard the other day pretty much sums it up in two words, for me, what life is like as an Alzheimer's Spouse: Juggling Chainsaws...