I'm new to this site and I'm a 42 yrs lady and my partner of the last 7yrs (aged 51) has just been diagnosed with early onset dementia. They are not able to tell us if he has Alzheimer's or a 'Lewy body dementia' He is being treated with anti-depressants and dementia drugs, Aricept and Ebixa. He is also taking anti-psychotic medication at night to prevent his mood rages/tearful episodes and to control his paranoia that people and objects are out to 'get him'. He also sleep walks and does very strange things in his sleep...such as removing light bulbs from light fittings and trying to climb out of windows.
He has terrible visual-spacial awareness problems and huge memory loss.
Can someone explain the stages of this disease..? We live in the United Kingdom, and I find the doctors have been very reluctant to explain the stages or the time scales involved. How long do we have to try and make the most out of life before he becomes worse..? At the moment, some days he's reasonably OK. Some days, like today, he's terribly hard to cope with. He is critical of me, despite the fact I do EVERYTHING for him. Today, we went to the store to buy a new appliance, he watched me buy the appliance, and when we came out of the store he asked me why we were there. It became apparent he had no idea where we were or what we had just purchased.
I find this as so difficult as I am sure all of you fellow members do.
I've found this we-site very helpful. I'm so glad I found it as even by reading it I don't feel so alone. My partner can also be rude and abusive to my 15yrs daughter who lives with us. She has also seen him naked during his sleep-walking episodes.
Any advice regarding what to expect in terms of time will help me greatly. The psychiatric team have asked me if I want to continue to be his carer. I think because we have only been together a relatively short time and he isn't the Father of my child. At the moment, I want to continue, but how do you decide when or even if to allow professionals to take over.? I am aware that I only have one life. I find this whole illness so hard to deal with. I'm 18 months in, as that's when the first symptoms appeared. It's only recently that we've been told the bad news.
Welcome, Gingerswan. this is a wonderful site for any help needed with dealing with dementia. you have a very difficult decision to make, i think in the UK you would be able to place him without any cost to you? it is very difficult to say how to advise someone else, but in my opinion if it was me and i was able to intern him with good care fee paid, i think i would have to think about it. you have a 15yr old to consider. her safety is number one. and yours and his own. he is getting doing alot of things that sound quite critical. putting a finger in a socket can killl him and opening windows and fallin gout or escaping another. not to mention naked in front of your daughter. he is so young its so sad. and you are only 41 many here are young as well-i feel so sorry but in my best opinion i would get the pro/cons on paper and figure out which way to go soon. hope you find the answers that give you peace. Divvi ps the various stages differ tremendously from patient to patient so its very difficult for timelines. maybe someone here can offer more input.
Welcome to my website. You will find a wealth of information, resources, and support.
Please log onto the home page of the website - www.thealzheimerspouse.com, and read the resources on the left hand side. I would recommend starting with "Newly Diagnosed/New to this Website", then "Understanding the Dementia Experience". Scroll through the "previous blog" section and you will see many topics to which you can relate, so you will know that your emotions are shared by all spouses or partners who may not be married, but are living as spouses.
Everything you mention from forgetfulness to rages to mood swings are common with Alzheimer's Disease (Lewy Body's and other similar dementias share the symptoms of AD, as well as having some of their own unique ones). All of this has been written in my blogs and discussed on these boards. You can do a "search" at the top of this page for a variety of topics.
You are in a different position because you are not legally married. You could walk away from it without any legal issues like divorce. (I am not familiar with the laws in the UK). Some spouses here have divorced when they didn't realize that an illness was causing the bizarre behavior, then took the ill spouse back to care for them. Others have found the violent, raging behavior too difficult to deal with, and have moved out, seeing to it that their spouses were cared for by others. This is NOT an easy road. I cannot tell you what to do, but I can tell you my opinion, which is to think long and hard about the road ahead. You may decide to see that he is cared for by professionals or his family, and save yourself and especially your daughter emotional torture and heartache.
You will find information on "stages" in the section - "Newly Diagnosed/New to the Website".
Hi & Welcome Gingerswan, I am so sorry you are dealing with this dreadful disease at such a young age. However, I am glad you found this forum, I am sure you will find everyone kind, helpful & non-judgemental. My husband is 58 years old, he has Frontal Temporal Dementia (FTD) his problems started about 6 years ago. He is in stage 5-6, he also had days of rage...as said here the "Dementia Devil" however, since starting Lexapro things have been much better...for now. He is on Namenda, Lexapro, Keppra & Lamictal. Again welcome. Please feel free to post at anytime.
Gingerswan, if you'll go to http://www.alzinfo.org/clinical-stages-of-alzheimers-disease.asp you'll find a good description of the 7 stages of Alzheimer's disease, as well as guidlines as to average durations of the stages. It's all an imperfest science, however.
I'd tend to place my DW around Stage 6c because she has to have hands-on help with all activities of daily living, but as far as mood is concerned (few delusions, good humor, sociable, etc.) she'd probably be closer to Stage 5. But then on the other hand, she's beginning to experience some incontinence and her mobility is extremely limited, requiring lots of help rising from her bed or chair and maneuevering into her wheelchair for too-frequent trips to the toilet, which would seem more characteristic of Stage 7. We first started noticing memory issues about ten years ago, and got a diagnosis of probable AD about seven years ago. Her progression was slow and even (perhaps slowed by taking Aricept and Namenda) up until about 18 months ago, at which point she would have been somewhere in early Stage 5.
Thank you so much to all of you. I've read the stages. Thank you Gourdchipper....It's not very promising. I'd say we're in stages 3-4 but in the UK it's not diagnosed in 'stages', not that I've found anyway. I think your system is much better and is easier to define.
I will be on here regularly and look forward to making your acquaintance. I only wish it were in more cheerful circumstances.
It sounds like Lewy Body Dementia to me--that is what my husband has. Acting out dreams are particularly characteristic. I was told life expectancy 2 to 20 years. In other words how long between stages is extremely variable. The doctor said if it goes slow or fast in the first year that gives some clue as to what to expect, but even then some people progress quickly and then plateau.
Welcome, sorry you need us, but we're here for you. You are not alone and you are asking all the same questions we've all asked at one time or another. We all want the "what's going to happen and when" answers. Remember, each person is an individual some progress quickly and others more slowly. Our journeys are similar and yet we have our own percularities. With that said, we are here for each other. This is a difficult journey and one I'm tired of. Blessings, Carol
Welcome Gingerswan, Sorry for your circumstance but glad that you're here! You did not mention how long your DH has been on the meds as some take weeks to "kick in" and work. (Such as SSRI type anti-depressants.) Your 15 yr old safety and your safety are certainly a priority and I'm sure your DH had no intention of hurting either one of you before this terrible disease took over. I am totally unfamiliar with the system in the UK but it seems worthwhile to look into the options so you have a plan you know you can implement if you deem it necessary. Welcome again, and also to Carol.
Welcome Gingerswan and Carol too! I'm really sorry to see that you are so young dealing with this. Honestly, I'm hoping that you can indeed find some suggestions that help. Stages are so unreliable. BUT if behavior is becoming a problem for your daughter and/or for you.. that is evidence enough for making changes if at all possible. The reasoner is broken..the good judgement is broken..the unpredictablity of some of those behaviors is also enough.. if one doesn't actually HAVE To endure them. If I had a teenager in the home, I'd be on pins and needles..
Re: Stages..I've mentioned on other threads, that my DH's doctors do not use the stage number system. I sort of wish they would, but they said the same thing Briegull said. Most of the AD patients are all over the place...not completely (say) a 5..but with some 6's. They use words to describe stages. Moderate, Moderate to Severe, Severe, Profound. I tried to give him a number by reading the stages as outlined on the Alzheimer's Association site and other sites found under "Stages of Alzheimer's Disease". Right, he's a 4,5,6,7. Suffice to say, he's in the 8th-9th year of Alzheimer's Disease.
He's been on the strongest anti-depressants for over 12 months. His depression has lifted in the performance tests, but his visual-spacial awareness and sequencing capacity have all reduced in his tests (become worse).
They started him on Olanzapine last december. This helps control the paranoia and rages. It also helps him to stay in bed as opposed to sleep walking, but it hasn't stopped this all together. He still gets up in his sleep 2-3 times a week.
The Aricept and Ebixa are new, as in, he was only given these drugs last week. He had a three hour exam with a neuropsychologist who found several problems relating to the back of the brain. He also has problems dressing, as in, he'll put his clothes on inside out and back to front.
He'll try to get into the back seat of the car rather than the front passenger seat. He also has trouble making drinks. We drink a lot of tea, and DH will pour the boiling water from the kettle into the sugar container or into the tea caddy and not into the cups.
He is a keen fisherman and he now struggles to tie the line knots. He also has trouble typing and using the computer.
He had an amazing brain. He is a chartered mechanical engineer and is a scientist and inventor. It's so sad to see him deteriorate like this.
He can't dosimple household chores any more. We had to have a handyman in to put curtain poles up and to hang pictures etc. DH simply cannot do it anymore.
He can't even place the duvet cover on the bed. He gets confused about which corner goes where..???
The Neuro-psychologist reported that his symtoms are consistent with a Lewy body dementia, so I'd be interested to learn more about that if anyone knows..To be honest, I'd never heard of it.
He also has strange muscle twitches and his arms will shake violently for a moment and then stop. If he's holding a mug of tea when this happens, it goes everywhere.
Pamsc...if you're on line can you tell me about Lewy body..? Thanks
Our neurologist also does not want to guess at a stage, other than "middle." He told us early on, "when you've seen one case of Alzheimer's you've seen one case of Alzheimer's."
If i knew then what i know now, i would have never worried about the 'stages'. with any of these dementias, lewy body or AD or Vascular AD or FTD, our time with them while they still know us is on a timeframe. i would have done more enjoyment for the two of us and not lost as much time dwelling on the 'whens and hows' and uncertainties of what was to come later. divvi
The twitches are why the diagnosis of LBD. The rest is all the usual stuff. I cannot expect my husband do to ANY chores, any folding of clothes or sticking of stickers or anything of the sort, except to cut up his own food and eat it fairly neatly. He cannot dress himself without hands-on prompting every step of the way, he does not know his name most of the time or who I am, or what country he's in, he wears Depends, he sometimes wanders at night. And yet - he can tell me the plot of a Sherlock Holmes story, eat sushi with chopsticks.. the regulars here know all the bits. He is a PhD mathematician. He cannot add two and three.
Hi divvi, that's what we plan, to do an many things that we always dreamed of doing together in the next couple of years before things get worse....but we don't even know if we'll have a couple of years. His Sister had only 2 yrs from diagnosis to full time placement.
There is a very strong family history. His Mother, Father, Uncle and Grandmother all died from some form or other of dementia.
Below is the link with the "MEMORY MAG." published by Alzheimer's assoc that has a very goo article on Stages. It actually gives time frames that I found to be very consoling. You might want to subscribe to the magazine. Welcome Bill E.
I found an LBD organization at http://www.lbda.org/forum. The people are not as communicative, but it might help. I, too, struggle with the stages. For my DH, his autonomic functions are declining. I don't see that anywhere in the stages because it doesn't appear to affect all LBD or dementia patients. For example, my DH has Central Sleep Apnea (his brain is not reading the signals regarding his need to breathe, so it doesn't tell him to breathe) and his blood pressure and pulse have recently dropped (in the last month). We have now taken him off of his high blood pressure medicine and the doctor just took him off of the cholesterol medicines. They aren't actually tracking his cholesterol any more. I don't know what this means in the process. For example, does it mean that he doesn't have long or does it mean nothing? That's what drives me nuts. Not really understanding what is happening to his body.
I am doing my best to hold it all together. We are going on a cruise to Alaska soon. It is what he really wants to do. I wish I could say that I am looking forward to it, but I am not right now. It makes me feel stressed out - the fact this is likely our last vacation doesn't help, nor does my concern about how he will do.
As they say, I am glad you're here, but not why you're here.
Sharan= Don't get yourself down before you go on your trip. The opportunity came up last week for me to accompany daughter #1 on a 4 day business trip to Boston. 5 hours away by air from the small airport in our town (incl. layovers) The trip is in mid July. I started planning about someone to stay with dh while I was gone. Making the arrangements for everything we have to do for a trip and I could feel myself getting stressed out alreads and my BP rising. I decided I shouldn't continue with plans. It wasn't worth it for me to have a heart attact or stroke. Decided it best for now to go on shorter trips and include DH. My stress level came back down.
I hope you have help for your trip and enjoy yourself.
Sharan, I took my husband on the caregiver cruise in February and my grown daughter went with us. It took both of us to be able to take care of him and for us to enjoy the cruise. I highly suggest that you do the same. Otherwise, the first words out of your mouth when you get back home will be "That was our last trip" followed by "We had a good time, but I don't think another trip will be possible". Do try to enjoy yourself. The memories we have of our last trip together are precious.