Some of you know about Beverly Bigtree Murphy and some don't. I found her site (bigtreemurphy.com) three or four years ago and even then it was a bit out of date; I don't think it's actively maintained. But so very much of it is useful as a supplement to the things we talk about here, that I encourage everyone to check it out. Her essays on "It's just Poop, People" and dealing with that eternal question, "Does he still know who you are?" are very much worth reading, or rereading. The images of her husband in his final days are resonating with me now, sigh.
Briegull, big tree murphy was one of the sites I found BEFORE I found this forum and it was a big help while we were going thru an unspecified diagnosis of "pre-senile dementia". I still highly recommend it because it has a lot of useful information and can help caregivers dealing with all stages of the disease. I too wish it was still maintained but her journey is over.
I also really like that site and even though the information is old, she is a very eloquent champion of those with dementia. I particularly remember the examples she gives about the stigma of dementia and how our LO's can be unfairly demeaned. even by people working in the caregiving field. As briegull said above, her take on incontinence is really good, as well as the description of the type of adult daycare program to look for.
Since Big Tree Murphy's journey is over and her site is not being maintained, makes me wonder what will happen to this site when Joan's journey is over.
I thought I would resurrect this discussion because I decided to visit Beverly Big Tree Murphy's website yesterday and although it has not been updated in several years, the information and her writings are still very relevant to all of us.
As MarilyninMD said I found the information on the stigma of dementia and how pervasive it is in nursing homes and the caregivers in the facilities. It is something we experienced when Rich was recently in the NH for rehab for his broken knee. Which surprised me was the demeaning was very apparent in the conversations I had with the geriatrician and even the geriatric care manager I've hired. And I don't even think they know it.
I just Googled BigTreeMurphy, looked through some of the images first. Probably wasn't a wise choice - I got a lump in my throat, my breathing changed. THIS is what it's going to look like!!! Just about broke my heart in two, plus a sense of panic - how will I ever be able to deal with this? Lord in heaven, help us all!
Mim, When I started this journey (and it was compounded with other huge life problems at the time) my best friend said, "You eat the monster one forkful at a time." I wrote it on my chalk board and read it every morning.
Every time you seek out information (and you will) the panic subsides a bit. As you read these discussions, you draw courage from all of those who have posted the good and the bad and the very, very helpful information. Panic is best dealt with by staring it down. Focus on your breathing until you recover, then distract yourself with some other thing to think about. Your mind will process the information so the next time you visit the site, it will not seem quite so scary.
I realized that if I buried my head in the sand I would not be prepared, and the panic would be even worse. If you begin at the beginning of the discussions here you will be able to follow different folks as they pass through the AD world of caregivers and their LOs pass through the various stages of the disease. Maybe it is best to read it one forkful at a time, but eventually you will see that with knowledge and sharing, everyone on this site is doing what they need to do. Not by choice or fairness. I sure don't remember voting for this in perk in life. But here we are, helping and encouraging each other along.
Mim, I am so very sorry you chose to look at pictures/images first...yes they are shocking and a cold slap of reality about what this journey is capable of bringing to us. Yet, many members here have had a different journey both in terms of length of journey, severity of decline, etc. If you've seen one person with Alzheimers you've seen one person with Alzheimers. Many caregivers have not faced the same type of end of the journey Bigtree Murphy did, so it's truly only her and her husband's journey. As Marche says, give yourself sometime and you (or your brain) will find a way to incorporate the information so it will be easier to deal with the next time.
The site has a wealth of practical information that is helpful in dealing with the various issues/stages of dementia and is quite worthwhile reading. I hope you do not abandon it and will give it another chance to help you gather information and advice to have in your arsenal as you and you spouse continue to live with this disease.
I can tell you a very simple truth about how I have acted and reacted towards every decline/change in my husband's disease. When I had researched what was happening and/or the next steps, I felt more in control-it gave me time to be prepared emotionally and prepared in planning and dealing with medical providers, etc. When I have been caught off guard suddenly, I have panicked, felt totally out of control and have behaved badly towards people who were "trying to help" to try and regain the control I so desperately desired and needed. I am much better emotionally when I can control the flow of information so I can digest it in my own way and on my terms. Surprises unhinge me and I am working very hard trying to prevent the absolute evisceral response the surprises (never good news) bring with them.
the section on Ethical issues...does he know who you are?, hit it all home for me. I am going to email that to anyone and everyone if they give me any more guff about why do I bother? I had a visit from a girlfriend that in every other way, I really like her, yet every time Dado comes up, she will say, well, does he know who you are? He will not know if you visit or not.
Honestly, it is really hard not to just STOP LIKING those people. It is not like I have not explained myself many times over.
Coco, I have already decided that I'm not going to explain myself to people. It's between my kids & I, & then the doctor. However or whatever we decide is our business alone. I guess if others don't get it, then they have a problem! I have yet to actually go through everything on BigTreeMurphy, but I will soon (without looking at pictures first!!)
I like that old story that goes around about the guy who visits his wife every day for breakfast at the nursing home even though she does not know who he is: I know who she is
yes I liked that too Charlotte! I get the feeling...that people that don't know what they are talking about, think that I am trying to get "brownie points", or that I am trying to get recognition or kudos for the love and care I show him. Not at all..the TRUTH is I really care for him, and WANT to see him, and KNOW that in his way, he knows.
I was the one who started this threads and I think I found it right about the time I found this site. Yes, it is sad and shocking to see and was a real eye opener for me. That said, I've recommended it to others for years. Back then, we thought aricept or nameda or coconut oil were going to be answers. Surely our spouses wouldn't get to that state, they'd be cured before then. Not!
Oh yes, try anything. Surely something will bring them back and stop this terrible disease. We've done the coconut oil, cinnamon, Aricept, Namenda, and other things....anything I read or heard that may help. No matter how hard we fight it, someone on this site said "the disease always wins" and it does. I don't want my DH to go through the end stages either. I do like the Big Tree Murphy site but the pictures of his decline are heartbreaking.
After my DH was diagnosed with “early dementia” the Neurologist's Nurse Practitioner gave me a copy of “The 36 Hour Day.” As I looked through it I kept wondering why she gave it too me. He didn't have any of those symptoms or behaviors. Little did I know..........
I think when they need to go to nh, they need us more than ever. Who will speak for them, or see that they are getting proper care. You here horror stories. Even my dh's children don't understand yet, they are still in the ( he has a memory problem) stage. They are all out of state and may never get it. Bonnie
As LFL and others have said, I believe in educating one's self about the disease. As painful as it is to stare dementia in the face, it's unstoppable and things will deteriorate no matter what we do. I think the fact that each patient is different in terms of the rate of progression/symptoms, etc., causes extra fear and uncertainty for the caregiver. However, sources like Bigtree Murphy provide a unique understanding and should be sought out. That said, I remember that it was painful to read--especially the pictures of her husband's decline and the expression in his eyes in the "after" photo.
"The 36 Hour Day" is a great reference book, but TMI for newbies, I think. It's a shame they don't have a watered-down version to give at dx (if the patient is still in the early stages). If one has no previous exposure to dementia, the full-blown book can scare the pants off families. I bought one called "Alzheimers Early Stages" by Daniel Kuhn and found that helpful for beginners. And even that was difficult to read.
Early on in my husbands disease, I found The 36 Hour Day book and tried to read it. It was too much info, too soon. This terrific website is where I was educated on this disease. I have read other books but this is by far my best source of information and advice, thanks to Joan and all of you who have shared your stories and wisdom.
When D. was first diagnosed, I went to a support group (no longer go there), & the gal behind the desk gave me a copy of 36 Hour Day. I started to read it, but put it away & haven't looked at it since. It really was TMI !!! I'm thinking of trying it again - maybe it won't scare me as much now!