I did not want to hijack Jazzy's most recent thread so I'm posting this musing as a separate topic. Is it wise for us to be participating in in-person dementia support groups, looking at or participating in online discussions, such as the ones on this site, and reading books and watching movies and TV programs about dementia?
Jazzy has told us that she needs a break from all the heartbreak and pain, so she'll just be dropping in here in the future. She's also quitting her local support group. Several other long-time members of this site -- often those whose spouses have died -- have notified us that they will no longer be following the discussions here. I can see the sense in that.
All this makes me wonder whether I'm paying too much attention to dementia. I joined because I wanted information about a specific topic and I still think that the expertise on this site is superior to what I've found anywhere else. But in addition to information, what I found here was emotional support that is not based on the kind of superficial platitudes I hear in the outside world. l feel that I'm among friends who, due to our common experiences, really understand what I'm going through. But there's only so much I can take - that's why I avoid fictional portrayals of dementia. Also, I wonder about relying so much on online communications. (Isn't there something about having too much computer exposure?)
Has any else had any thoughts about the pros and cons of exposing oneself to to much dementia-related communication?
I need breaks and they are good. But we can't change that we live dementia every day 24/7. My husband is slow moving, so not much to post. And what he is going through is nothing new from what others have. I am sure a day will come when I will need more 'one on one'.
Yes myrtle, I do think that I allow dementia to consume me and I'm not sure that's good for me or my spouse for that matter. In many ways it has made me one dimentional and has severely limited my ability to discuss broader, more relevant issues with other people. The all dementia all the time provides me with a cocoon in which I've become comfortable. Like you, I came to this site seeking information, advice and comfort which I did not find anywhere else. But it's now 6.5 years and I find that I am now sharing my experiences and advice. I feel strongly that I want to "pay it forward" and offer assistance to all the newcomers starting the journey and struggles that come with this disease just like those before me helped me. Actually I feel it is my obligation.
I visit this site every day at least twice and offer advice and opinions when I think they're helpful, but I have been posting less frequently. Perhaps a break is what we all need.
This site has been a lifeline, and I don't think I could have gotten through Larry's death and dying…or these early months of widowhood…without it. I am a person who forms real life relationships…I don't really believe in online "friendships." (Mim and I live in the same town, and are trying valiantly to get together for coffee--the weather is not cooperating!) But this website has been the exception that proves the rule…I simply have not had anywhere near the support, good advice, and emotional understanding that I've found here. I do still check back two or three times a day, but I know that will decrease a little bit as I slowly recover from the Alzheimers nightmare and the devastation of Larry's loss. I was just thinking this morning that I am a little bit like a child learning to walk, but getting better and better at it all the time. Yes, I am still holding your hands, but I think I can start letting go a little more and a little more, as I become happier and stronger by myself. I will always continue to come back to Joan's, I think, but in the sense of reading all the posts and seeing what I can offer in terms of help and support to others…not just to seek support for myself.
I also agree with those who avoid fictional portrayals of dementia…no thanks. I had enough in real life. I don't need to read books and watch movies about it…excellent though they may be.
I seldom post but I check in often. I feel like all of you are family and I want to know how you are doing. I am a one finger typer so I don't do long post. There is a lot of sadness but when I see someone finally accepting the situations and getting on with living it makes me happy.
I am with elizabeth on this one. And I think there are times when we can just keep whipping ourselves with pain when there might be a chance to do something better. But with caregiving and loving a dementia patient, through thick and thin, there is NO ESCAPING, it is CONSTANT and without this place to come to there would have been no place for me ...friends and family and phone calls can only do so much. Here, is is always available. Support for ones in the trenches of any caregiving or illness is soooooo helpful. (thanks Joan)
I always came away feeling loved and better when dropping in. It is true now though...that things have changed so much, and my contribution is focused on Dado's memory and honoring him, recovering, and, trying to help others still deep in.
Today makes 7 months since my darling sweetheart left us.
I do think constantly thinking about Dementia is hard on me. When Drs and friends say " You need a support group" I dont think they realise that when I finally get an hour or two to myself the last thing I want to do is sit at a group of people that are all trying to figure out how to deal with --You guessed it "dementia".. I found it depressing and it didnt help me at all. Being able to log onto this group.. search for the info I am looking for or read posts as I can help has helped me tremendously. I dont log on often as time doesnt allow it but I find a certain sense of belonging and friendship here. In the real world friends and family that dont have to deal with it..or really choose not to, dont get it. Dont realize what we are all going through. Sad but true fact for a large percentage of caregivers.
Wow, Myrtle, what a great topic. Thank you for starting this thread. Here is my take on the subject. Of course, what I have to say is general – not every plan, emotion, or need is the same in everyone, but I believe that we go through stages of dementia support the same as we go through stages of dealing with and accepting the disease.
In the beginning, at diagnosis confirmation, most of us are in such shock, we do not know where to turn, and seek to soak up any and all advice from physicians, social workers, psychologists, books, seminars, and support groups. We quickly learn that we are entering a different world from which the death of our spouses is the only exit. It is natural for us to seek support from “like minded individuals”, such as all dementia caregivers. We then learn that we need a more specific type of support – from caregiving SPOUSES of those afflicted with Alzheimer’s Disease. Many find it here on this website. While learning everything possible about Alzheimer’s Disease, from clinical information to support from others experiencing the same emotions as we are, support from those who understand us as our non-Alzheimer friends do not, we become immersed in this “new world”. We take from it what we need for as long as we need it.
The next step is a pull back. As Myrtle’s title suggests – “All dementia all the time” can become suffocating. I experienced it after almost 5 years in the same face to face support group. I thought I was going to scream if I had to sit through one more of the same story with different faces over and over again. Yes, I get the irony of that emotion, given that I run a worldwide online support group. The difference in online support and face to face support is that when you are online, you can pick and choose to read the topics and responses that interest you without having to sit through 6 discussions that are irrelevant to you. You can choose to read and walk away or read and respond.
So I pulled out of the face to face support group and found myself at the next step. No non-Alzheimer friends. A single world in which I did and did not belong. A widow with a living spouse. In limbo. It has been a year and a half of struggle to find a place where I do belong.
The last step is different for everyone. After a spouse with dementia dies, many Alzheimer Spouses choose to keep at least one foot in that world, giving back their experience, support, and advice to “newbies”. That can be in the form of political activism, hospice volunteering, dementia facility volunteering, writing, and public speaking about Alzheimer’s Disease. For others, their experience in Alzheimer Land, although seared into their being forever, having changed them and the manner in which they look at life, run as far away from Alzheimer’s Disease as their legs can carry them. My advice would be – take whatever time you feel you need away from the Alzheimer World whenever you need it. Come back to it when you feel the need. As with everything related to Alzheimer’s Disease, do whatever makes you comfortable on your OWN timetable.
Joan, your post resonated with me in the third paragraph. I experience the same group emotions you describe and it is wonderful to be able to log on here when I want to and read what I want to. I can search for topics that are suddenly important to my situation. Strong or needy personalities tend to dominate support groups which makes the 90 minutes sometimes tedious and unhelpful.
For some reason, probably that I am a bit irritable (wonder why??), when the leader of the group says, "Are you taking care of yourself?" I want to scream. What does that mean anyway? My emotions are all over the map and some days I can hardly get out of bed. I might mention that here where there is more concern and more privacy but never in a public group because I am too shy and too stoic.
So the advantages to this group are that there is more openness and more privacy; sounds like an oxymoron, but it works effectively. We can come and go on our own terms. And most importantly, if we feel desperate at 11 pm and post it, there will likely be someone to drop by to offer support and throw out that old rope. I've found that it is important to know at 11 pm or 2 am that I am not alone and the door to this site is always open.
I feel the same way about the face to face support groups. They are dominated by people who have ridiculous questions and issues that don't belong at the meeting. And I HATE that, "Are you taking care of yourself?"! I'm really afraid someday they'll ask that and I'll flip out and say F you. And like you, I have days I can't get off of bed. On those days, am I taking care of myself? Who the hell knows. All I know is there are days I can't get out of bed.
Anyway, back to the topic at hand, I escape through reading, computer games, reading about other people's lives on facebook, watching movies and TV shows. And making it a point not to think about dementia 24/7.
I am quitting my face to face group also for the same reasons. I feel I have nothing to offer especially to,the new people. They must walk the journey as we have. It is only in walking and experiencing what we are all going through and have gone through that you really understand. I too want some new friends outside of the dementia world. I have not quite figured that out yet but am working on it .
I never did join a face to face group. I never felt like it was the right time for me. I was always in transition with DH, going from one stage to the next so fast. So never got to it. And as time passed this place was just where I needed and wanted to be. Open 24/7. It helped in so many ways.
Now I find myself stopping in from time to time. Checking in on everyone. But we all need a break of some sort.
Mine was surfing the internet and watching tv. Still is. Still working my way out of the mindset of dementia. It seems to hang in the air even after the *
Excellent topic. I have no face to face experience because I would get kicked out.
Remember though, that we have lost and are losing foundational things in our lives. Remember also that your trust and willingness have been abused. Don't throw things out if you have doubts. Take a vacation from them and see.
There are ways to set up safe experiences both large and tiny. I have to be at the funeral home at 10 but I would like to post afterwards on safe experiences large and tiny as part of all dementia all the time.
I've been in a Face-to-Face group since 2009 and am thankful for it. Wonderful people. At the beginning so many were dealing with problems in my future, now I am able to provide some advice to those just starting out. But just listening to others is very important.
I have also had the biggest laughs in my life in my group. Joking about the most upsetting and depressing and disgusting things ever. We know we would like very odd to outsiders.
Over the years the group has grown and shrunk. Some times there were literally just 2 of us at a meeting, now it is running around 16 people.
A few things have been key to the group. It is a younger onset group so everyone is dealing with young parents or spouses or siblings. Since many of us are dealing with younger LOs there is a high proportion of people dealing with FTD/PPA/Semantic Dementia. Some of us have young children at home. None of us are in our 70s or more, no one at normal retirement age. Having a LO with YOD and attending a group of people in their 70s, 80s and 90s probably wouldn't work out since we would be at such different parts of our lives.
We also have great moderators. No one is allowed to dominate the group or a session. If someone is new or is going through a really bad experience they get extra time.
And I've made friends who I talk with outside of the group setting.
How interesting this is! I know I've stated in the past that the couple of times I attended a face to face "support" group, the one who did the most talking decided to try to psychoanalyze me for something that I shared. She also stated that her "me time" was coming to the meetings. I didn't go there to be analyzed & I surely didn't want that to be my "me time", so that was it for me. I much prefer coming here & one other closed group on FB - I've learned more practical, hands-on advice on these two sites than anywhere else.
Like Charlotte, Dan is going very slowly & I don't always have a lot to offer. And sometimes, the too much Alzheimer's all the time gets to me & I need to back off for a while. It really can be just too much. I keep my sanity (well, try to keep it!) by reading, playing on the computer (some play games, I use Pinterest, Tumblr, We Heart It, etc. to find photographs of beautiful things). I occasionally clean house!!! :) I have lunch with a few friends on occasion & I WILL get together with Elizabeth* eventually!
I go to my second support meeting tonight. Last month the moderator had to leave after an hour so we only had time to introduce ourselves. Most all there were spouses and I think their first time. One woman even brought her husband who had just been diagnosed the week before.
Since I stopped working in the RV parks, the neighbor has been my escape to the 'normal' world except she has had two strokes in the past. She is only a year older than me. It is funny because we really have little in common but I think because she tolerates hb I can tolerate her. I have learned if she is having a bad day to leave or she might say something I don't want to hear. She is leaving in 3 weeks so it will be interesting - I will have no one to really talk with even though she thinks I don't give hb enough credit or allow him to try and do more. She also thinks I should be more affectionate towards him. She told me a couple weeks ago - I never see you hug! We rarely do. She does not understand the need I have to 'wall off' my emotions or feelings to survive. Oh well.
Otherwise I pay extra for good internet, since the wi-fi here is bad, so I can be online whenever I want, play games, read and research whatever, watch shows or videos, listen to music, etc. It is my escape.
We have a rule against the person with dementia being present. Some groups have a parallel group for the LO since not everyone can leave their LO home alone or make other arrangements. Their presence makes it hard to speak openly.
Recently we started using a timer to limit people to 5 minutes for their initial comments to ensure everyone has time to talk. Newcomers get more time. We started the timer because our group has gotten so large.
Charlotte, I am sorry you will be losing the one person to talk with at the RV park. I understand about the unwanted advice and all I can say is to not argue and continue as you were.
I did not enjoy the in-person support group we tried back in about '09 or '10. It was the type where they broke the caregivees off from the caregivers. Jeff had surrendered his license by then. Inevitably, a topic of discussion amongst the people with AD was--who still drives and who does not. This led to renewed frustration on his part every time, and the necessity for me to once again repeat the task of distracting him from the idea of driving until it left his head. On the caregivers side there was always someone who monopolized the floor. I found it aggravating.
As for all dementia all the time--yes, I took breaks from this forum throughout my caregiving years, and checked in to receive or provide counsel, when I felt the need.
I do not like to dwell in it now. The scars are always there, and I will always be in the process of trying to reconcile with life to some extent. I admire those whose LOs have passed who go on to volunteer in the field.
I am coming to believe that my focus on Alzheimer’s has caused me to avoid addressing problems that might be caused by other things. Specifically, I think I am blaming my lethargy and hopelessness on my husband's Alzheimer’s when the problem is probably my work.
When my husband was diagnosed 9 years ago, I was 59 years old, self-employed, and working full-time doing legal research and writing. When I heard the diagnosis I fell into a deep depression from which I only partially emerged. As the years went by, I keep working, although not as well or as productively as before. I moved to a home office and the quality and volume of my work has suffered. My income is nothing to brag about, either. All this has caused me to become demoralized. I should have retired 3 years ago but since my income took a huge hit during the years of at-home caregiving, I’m still working.
I’ve been blaming Alzheimer’s for my depression but today I realized that the direct cause may not be Alzheimer’s at all. Yes, Alzheimer’s is the direct cause of my current circumstances, but it’s not the direct cause of my misery. It’s the circumstances that are causing me to be so miserable. I need to figure out how to change the circumstances if I want to be happier. And I do. I’m sick and tired of being miserable. Does this make any sense?
Yes, it does make sense, because it is similar to the way I feel, too. As Al Z. Heimer is starting to fade away in my rear view mirror, I realize that family issues and geographical issues are making me troubled...it is a result of the Alzheimers, but Alzheimers is not the direct cause. For me, it is time to get a grip and truly move forward, as I've talked about on the widows/widowers thread. I started today by doing a grand and glorious sorting out of my clothes. But Myrtle, with your husband still living, you are still right in the middle of Alzheimers caregiving. Even though he is placed, you have a million things to oversee with him, and the constant driving back and forth to the facility. The situation is simply horrendous--not really a wife, not yet a widow--and trying to work independently at home--which has its advantages but doesn't give you social contacts--must be very trying at times. And I know that you have pets to take care of, and your house, yard, car--everything. Frankly, you have every right to be miserable. It's a miserable situation. But I suspect that focusing on some positives and just enjoying the moments may make you less miserable. I don't know whether you want to stop working or if it would be possible to make some changes to the job, but that might be something to think about, too. I would figure out what is restorative and brings you relaxation and peace, and try to do more of that.
It makes all the sense in the world, myrtle. It also takes an a thoughtful person to muster up that sort of insight in the throes of depression. Such insight is bound to be helpful in resetting your "normal" button.
Things will never be what they were before AD and all of its collateral damage, but they can be as good as can be expected now. It sounds as if that is what you are seeking.
I hope you share more of your insights as you "reinvent" yourself. (Is "reinvent" a properly descriptive word to use for this? Your talent as a writer comes through in your posts - so you surely have a good word for what you hope to accomplish here.) I'm certainly interested in reading your thoughts as you work through this lingering depression.
Myrtle, I was just wondering if you are able to get outside much for a little fresh air and exercise, or have some way to have a connection to nature--sitting on a porch or something like that. I have found that it makes a world of difference...for the better. Also, I think keeping track of what is happening in the night sky--and going outside on clear nights to take a look at the brighter and more obvious stars, planets, and constellations...and the ISS of course (NASA has a website--you can sign up for emails telling you when it will be overhead where you live). These things are helpful, although I'm not sure why. A green plant or two in the house--nothing that is going to involve major care--gives a feeling of growth and life...also helpful, I've found.
I've never been to a face-to-face support group meeting. I do think about dementia quite a lot--whenever I get on the treadmill to exercise, for example, I put my headphones on for some music and I browse the Web on my tablet, often landing in discussions of caregiving, well spouses, and Alzheimer's Disease.
What I've found most valuable on this site is not so much the advice about day-to-day living, social and government resources, and so forth, though that's all good; instead it's the non-superficial, non-judgmental listening and commentary of the people here. To the outside world, I think Alzheimer's spouses tend to be viewed as saints or villains (depending on how they deal with their situation), which has the bad effect of making it easy to forget about them once they've been pigeon-holed. Most of you are saints, of course. :-) I'm only half-joking--this life is full of shades of gray, but the writing I read here are inspiring and encouraging, even the writing that might not be intended that way.
Excellent discussion! I can't add anything new to the conversation.
I do want to echo though I truly would not have made it through this journey without this site. I also had negative experiences with face to face groups and have had feelings as others mentioned of wanting to scream and/or swear. Here, I do feel as if many of you are my friends. Over the years I have gotten to know so much about many of you and look forward to your comments.
As others have written so well, here there is support, unique support, without judgement. And people who truly get it. As I have written a few times, as nurse, I was around this disease all my career, four decade career. I thought I knew something about it. Until one lives it, one knows nothing in my opinion.
My husband died 7 weeks ago and I am amazed at comments people offer me - such as "You doing well?" rather than saying, "How are you doing?" I want to scream. Inside my head I think, "Doing well. How do you consider well? I am pleased I got out of bed today." Instead I just respond with, "I am doing ok." My guess is people don't really want to know how I am doing. I would rather people not say anything. Here people want to know and understand how I am doing and again get it.
Myrtle, your question is so great. I am of two minds. On the one hand I have learned so much and can offer experiences to those new. I almost feel an obligation. On the other hand, I am so sick and tired of this disease I want to run away.
However, I won't run away from this site. I tell everyone who will listen about it. I visit daily and although don't post much, I highly value each of your voices.
elizabeth*, Yes, I am able to get outside sometimes. I have a nice yard with flower gardens in front and back and a vegetable and herb garden on the side. Not to mention my newly decorated “she shed.” But due to the pressure of my work, I don't get out there as much as I would like. E.g., today is a beautify sunny day here but I will working indoors, trying to a meet a deadline for Monday. Anyhow, halfway measures are not enough. For me, deadheading a few blooms is like giving a drop of water to a person dying of thirst. I need to put my hands in the soil for hours, to prune the boxwood hedge, to pot plants for the patio, to explore a garden center 25 miles away. I need the whole enchilada.
Yesterday I had lunch with an old friend from work. We have a lot in common (same age, both originally worked in similar fields and changed careers in mid-life). He suffers from much the same symptoms, although not to the degree I do. He thinks a big problem is work-induced stress, which has depleted my reserves to the point I am running on fumes. He reminded me that I have spent almost 30 years juggling multiple deadlines and also trying to solve other people's problems. The stress of my husband’s illness – both the caregiving and my grief about what has happened to him – has tapped out whatever was left. He encouraged me to wind down my work drastically for about three months and to draw on retirement savings if I had to. He is right. Will write more about this later. Back to work.
While he is gone to day care I get that break from Mr. AD. While I was still workamping and he couldn't that was my break from the AD world. Now I have the day care. Since he enjoyed the one day I am taking the 3 days he was approved for. I am looking forward to having 21 hours total a week out of the world of dementia and all that goes with it. The break is sooooo nice.
Myrtle, I too know what it is like to be self employed and having to work plus take care of a Mr AD. It just about ran me into the ground. I had to give up something. So I am living off of my/our savings. At some point you have to take a break. You can't do both.
I would have rather worked than look after Mr AD, but, at $25/hr for PSW's, that wasn't going to happen. Now I get 3hrs/day for 3 times a week from the "community care". It's still not enough, but, It gives me a breather. Don't run yourself into the ground, you will not have anything left for the "long run" and believe me it is longer than any of us thought.
This post was meant to be helpful to you Myrtle, but, I realize it is have rant, half blowing off steam.
Myrtle, I am also self employed and was 55 when my partner was diagnosed 9 years ago. I can totally relate to both your description of lethargy & hopelessness, as well as ongoing depression and circumstances decreasing productivity and being the cause. It does make sense. There are many things I need to make movement regarding selling a business to retire, moving and cleaning out and selling a second home we were moving to, but honestly I have hardly the energy to drag myself to & from the nursing home, take care of my business and my animals & self. I lived so long putting out whatever fire was needing the most attention that everything is off the edge, in disrepair, disorganized, or in a pile up. I appreciate your sharing this, and others input here, because I am feeling lost for answers myself.