I have had a great support group for the last three years but today I had to say goodbye! There is no one in the group with the same difficulties that I have and I can't help them anymore and they can't help me. bv Fronto with vascular and Ad is a potent combination. Right now Kevan is doing very well but can change in a very short time. The other problem is the fact that no one else in the group have a partner in LTC so that is a big difference. There is not much in common. I'm really sad now and don't know where to go to find a new support group with any of the problems I face.
jazzy - I don't have any face to face support and many here do not either. This group and groups on Facebook are where I get the support and information I need.
I bet there is an online group for the type your husband has and when you find that group you might find ones that live near you.
I don't understand why you can't continue with this group. I don't think your situations have to be exactly the same in order to support one another. What happened to cause the break?
Hi I thought that I would be fine coming back to this group but I am the only one with someone in LTC, the rest seem to be fearful of this and even though they are exhausted and run down are unwilling to even use respite or have help come in. They have not taken the time to really educate themselves about the disease and continually complain about the same thing each meeting but will not try suggestions from experienced caregivers, just seem to want to complain. The facilitators don't seem to want to encourage them into a reality check and every time I bring up a subject that I am dealing with , they warn the others that I am in a different situation. What is different about disability tax credits, caregiver tax credits, competency letters. I had most of these taken care of over a year ago but they just drag their butts and now the light went on. Learning how to protect your self and your finances is important for a caregiver to learn. What is so different from my situation and theirs? What is different about one person talking about their experience with agencies and Dr.'s then another's? On this chatline if I come on with a situation that I am having difficulty with I will quickly have a number of others who will be sure to let me know how to handle the situation. Some are partners caring for bvFronto most are not but they help me see how to handle the situation and I never get put down or reprimanded for how I have handled things. If I read a thread and give my opinion no one ever tells me my situation is different and makes me feel bad about giving my opinion. I have begun to realize that the problem may be that the name Alzheimer's Society" is restrictive and with all the diseases under the Dementia umbrella that maybe the society should change it's name to Dementia Society and start training staff in all the Dementia's not just limit it to Alzheimer's. Most of the facilitator's I have run into have no idea about The Fronto's and Lewybody. They are mainly trained about AD.
Moon I didn't think my situation was any different and when I moved back here a month ago ,I had looked forward to the support of the group. That didn't come about. When I told the facilitator that I was not coming back he seemed relieved and didn't try to help me work through this uncomfortable feeling. Just bye! I have taken a lot of time to educate myself about this disease and since my DH has three I have researched all three extensively and yes my situation is different because of the bvFronto , but others there have VD and AD but I'm different. My friend suggested that maybe I know more then the facilitators and that my be the problem as I am continually bringing up subjects that they have to check out. That's not what I intended to happen. I just wanted to share my life with others. Isn't that what we are supposed to do. Yesterday one of the ladies was having a problem with he father turning on the Taos and running water. I asked her if she had turned the hot water tank down so he wouldn't get scolded, she said no one had told her that and most of the others had never thought to to that either. I guess that part of my situation wasn't so different.
Jazzy, I am so sorry that the support group is not there for you.
I have never belonged to a face to face support group, because geographically it would be difficult, and because the Alzheimer Society in this area operates predominantly in French (despite this being a predominantly English speaking area of Quebec). If it wasn't for this website, I would have no place to go for support, no place where people "get it". I think you should make your concerns known to the National office of the Alzheimer's Society - there may be others who feel the same way, but unless you speak up nothing will ever change. You might also look to see if there is a senior's group in your area you could join - the stigma of Dementia still runs very deep, and you might find in a senior's group that there are people who have an understanding of the dementia because they are caregivers too, but just not public about it.
This is unfortunate since you have so much to offer the others since you are farther down the path they are heading. In my f2f group people are at different stages and that has never been a problem.
Jazzy you worded so well my experiences with the Alzheimer's Society and I agree with bqd if you have the energy it would be good to take your experiences forward to decision makers.
I attended two meetings of the Alzheimer's Society and quit. Their intent was genuine and no doubt met lots of people's needs but not mine.
I do not have the energy to speak to anyone there about my experiences.
My husband also has frontotemporal dementia with a behavioral deviant and many health professionals know very little about it, and some none at all. I found a dementia consultant and hired her to educate the staff and me in my husband's facility. She has been a life line for his care and thus my mental and emotional health.
It is this site where I get support. Tremendous support. I do not post often although tune in every day and read many posts several times. People here truly do get it thank heavens otherwise I shudder to think what state I would be in.
I also regularly see a psychologist specializing in grief.
Thank you again sincerely to each and every one of you. I tell everyone who will listen what an excellent online support group I belong to. The Social Worker took the website link at the last meeting where spouses get together monthly and put it in the facility newsletter. So we might see some new members from western Canada :-)
I am floored at the lack of knowledge by health care professionals regarding Fronto and especially bv. I can't imagine that there just a few of us. They seem to focus on Alzheimer's and ignore the other Dementis , like The Fronto's, Lewy body etc.
I am so happy to hear that you, katherinecs, have experienced the same thing as I have. When Kevan went into LTC I had to send a web site to the assistant care director that explains how to talk and treat bv Fronto's. I think this is to much for me to take on as my own health both physical and emotional are giving me enough to take care of. Learning to live alone has played havoc on me as well as the other health issues. I am arranging for help for me with the house and yard. I had all that in place when Kevan was home but as soon as he left I was cut off at the knees. I am now eligible on my own. All these rules and qualifying is a pain in the a**.
Jazzy ......During the journey that I went through, I had found a local support group which was quite helpful for me however within that group, our situations were very different but we were all caregivers for loved ones with dementia so that's the way we related and supported each other. ......Since I found this site, that was all for caregivers of spouses, I felt closer here and didn't need the local group anymore. There are so many different types of dementia and so many different problems we face, but there's one thing for sure ..... dementia is dementia and our dear spouse will always be our dear spouse. I was so thankful to have found this site and the wonderful caring people here. ......Just put it all out there, Jazzy, We can help you..........GeorgieBoy
So many if this group are struggling with handling the difficulties of being a Dementia caregiver and you just can't get them to do their research, where is have spent endless hours searching the internet and talking to anyone with any experience and maybe I am to educated and sometimes they don't want to hear the truth or are not ready to hear it as you all know it can be painful. When Kevan was home it was very different as we shared many of the same problems but now I don't seem to have much patience with the ones that have their head stuck in the sand and don't follow even safety instructions, like turning your hot water tank down so your partner won't get scolded. " Oh, I can't do that, my dishes won't come out of the dishwasher clean, or my clothes won't get white in the wash, or my partner has no idea who I am but he walks downtown for coffee everyday and has cut the wood for the winter" I ask" what does he use to cut it? He uses his chainsaw" or" no, I could never take his lighter away, he has to have his smoke before bed" Oh no he will never allow a caregiver to come and stay with him while I am out, it better for me to just stay home then to fight with him. I went through this when Kevan was home and the very same facilitators told me how I would get run down if I didn't get out and make a life. I did have something good come out of my hurting my back. I will be getting a cleaning lady in to do the vacuuming and someone will be coming to cut the grass and the snow will be removed this winter. This company also have full meals at a great price and I can order on Friday and it will be delivered on Monday., there are soups, deserts and a great selection if main courses. This will be a big help as I can just toss one into the microwave when I come back from visiting Kevan and I am tired and stressed. So maybe it has been a good thing in the long run. They also have asked me to volunteer with them and I am going to look into that next week. My son and his wife are coming next week end from Alberta and I am really looking forward to it. He wanted to know where I would like to go for dinner on Friday and Saturday evening. It's been a long time since someone has taken me out for dinner to a nice restaurant I am starting to have some health issues and it is really scary when you are alone. I am looking at getting one of those things you wear on your wrist incase you need help. I don't think my little Wiily could help. LOL Your right Georgia, this is the best please for me now. Thanks for listening. Hugs
So very sorry, Jazzy, that you have to go through all of this - as we here have also. When thinking of a panic button to wear - please look into getting one that you can use anywhere - when traveling, wherever. I keep Great Call in my pocket at all times. If I press the button, they respond, if I can't respond they immediately will call 911 and other contacts you have provided - they know where I am, whether in the house, at the mall or 650 miles away from home. It's wonderful.
Jazzy – your post brought back memories of a spouse group I belonged to in the early stages of my DH’s AD. I learned a lot about myself and the way others think.
One woman cried a lot, twisting her handkerchief, and she had a right to cry, we all did. She was distressed about something with the gardener and her DH, so I told her to lie to her husband to just get things done in the yard. I thought she’d pass out. She blanched, the hankie twisted more and more and she said, “I’ve never lied to my husband, I could never do that!”
Well—I was further along than she was and had already learned that lying often made things easier and calmer for him and for me. I know others like to call it ‘fiblets’ and that’s good, too. Call it ‘cottage cheese’ but just do it! There are ‘lies’ and then there are LIES.
One man brought in a paper he’d written to read to us that he was going to tell his wife to explain why she is confused. He was so pleased with his logic, how clearly technical and exacting it was and wanted us to tell him what we thought. Obviously, I don’t have to tell you the outcome of that!
And I’ll never forget the woman who had a very advanced DH at home and also had a lover. They’d go away for the week-end, things like that, but DH always came first, he had 24/7 care, the best of everything, her undying love, and she did hurt for him, always wanting to learn more about how she could ease things for him, but felt she had a life to live, too. Wow!
I, too, had already done a lot of research about AD & dementia, but I knew I had a lot more to learn and made plenty of mistakes. I stayed with the group a couple months and really did learn a lot, although maybe not all I thought I’d learn, and then, for me, anyway, it was just going over the same things again and again, and so I left. Sometimes things just outlive their usefulness.
You are all so right. I guess it did just outlive it's usefulness. I just got so tired of them not moving to the next level and going over these things again and again. Thank you for helping me to move on.
Jazzy - this thread has made me think of this site and our Facebook group – how they both have changed. I have often asked myself the last year 'where do I go now"? I don't always explain things like Wolf and others do but I will try to explain best I can. Please no one be offended because it is not meant to be that.
This site use to be very active when I joined in 1/2009. Joan and all the others were in the thick of things. Since then either their spouse has died, has been placed or still at home but bed-bound in a 'maintenance' pattern. There was always 'stuff' going on that they needed each other for support, encouragement, advice, etc. That seemed to all die down, and I think I noticed it most after Joan placed Sid and she came out of crisis mode. I believe for Joan, this site will be more supervision/administrative now because she finally has been released from the exhausting daily care of her husband. She is now his wife, not caregiver.
Others that were active back then, their spouse has died but they stay to help where needed, giving of their wisdom and experience which I am very grateful, or they may post mostly on the thread for widows/widowers (I have not read that thread yet). I am sure they read here but they don't need the same type of support and encouragement that those of us with a spouse still in the early, mid or late stages that require our 24/7 care/attention. Otherwise, there are more layers to this group now with people's needs distributed among them. I feel most are in the newer groups while there are those of us in the older group (spouse still in the midst of the disease). And it feels there are fewer of us in the ‘older’ group with most being in the ‘placement’ or widow/widowers groups.
I believe there are many lurkers but for some reason they have chosen not to join in for whatever personal reasons they have which is fine. My husband has been on a very slow decline so there really has not been a great need to post, mainly because of the knowledge I learned from the time I joined here. Plus, he was diagnosed so early in this disease compared to the majority of others. But now as I am more aware of his declines, I am wondering ‘where do I go now’ for the help for what is to come?
I have joined dementia groups on Facebook but most are kids taking care of parents. Most posting there know far less than me (thanks to this site). Those that answer, answer from a child caregiver vs spouse which we all know is totally different. The Facebook group that consist of people from here, again are mostly those with spouses that have died or are placed. Yes, when I post I get good support and answers but I really do not feel I belong there anymore. The Facebook group was setup as a place to share other than what is going on, but I can get quick responses there where here can take longer. I also want to say to those that I truly enjoy reading about the new lives you are building, your trips, etc.
I often feel like the ‘odd man out’, like I don’t belong to either place anymore. I feel like the majority has moved on leaving me behind. Like every one has gotten ‘well’ and I am the last sick person there all by myself.
If there are those in the early, mid or late stages out there not posting, please consider posting. Don’t let this site die.
‘Where do I go now’ is the question for all of us.
I feel more like I have left them behind and have not found a new home yet. Your very right about so many things and I thank you. Even since I joined last year I have found that so many of the ones who I counted on for comments are not here anymore and as you say it is for many reasons in this journey. I guess we will just have to try to help each other as much as possible. My husband is advancing more slowly then others so I know how you feel.
Charlotte, Oh, my, where to start in response to your post? First, let me say that I take no offense at anything you have said, but I feel that I need to respond to some misconceptions on your part.
#1. (For Jazzy) - I understand the feeling of not belonging to a group anymore, as it happened to me in my face to face support group. It was an “early stage” group, and I received tremendous support and friendship from it, but after 5 years, I was in a different place than the new, “early stage” members who were joining, and I couldn’t sit and listen to the same thing over and over again. I needed something different. I never did find it in a face to face group. I found it here on my own website.
(For Charlotte): #2. My blogs chronicle MY and SID’S story, so of course, there is going to be an evolution from my struggles and emotions in the early stages to my struggles and emotions related to placement. However, I try to gear my blogs to everyone in every stage from non-diagnosis to death. But if someone does not find what they are seeking in my current blogs, there are scores of older blogs, discussions on the message boards, and resources on the left side of the website that should meet their needs.
#3. We are continually getting new members in every stage of the journey, and I believe, from the e-mail feedback I receive, that they are receiving the support and information they need relative to a spousal situation, rather than a child/parent situation.
#4. As far as your comment about my being a “wife” now, rather than a “caregiver”, anyone who has a spouse in placement can tell you that the opposite is true. The longer my husband is in placement, the less of a “wife” I am. A “wife” is a partner in life; a lover; a friend; a sounding board; a person to depend on. This is also what a “husband” is. We, whose spouses have been placed, no longer have any of the roles I described. We are overseers to our spouses’ care; we are lonely “widows/widowers” with living spouses, but none of the benefits of the spouse role.
#5. If it seems that I am more an “administrator” than participant in the website, it is only because I have been paralyzed by grief since Sid’s placement, and I am only just beginning to emerge from it. It has been difficult for me to write, to express my emotions, to participate in life, sometimes to even get out of bed.
#6. The particular “sticky” topics at the top of the discussion board are meant to help spouses in specific situations – Widows and Widowers and those with Spouses in Long Term Care.
#7. I am so sorry that you feel that you are the “odd man out”. I see it differently. I see us all struggling and coping as best we can with all of this emotional pain. Yes, there are those whose spouses have died, and the living spouse has managed to find a light at the end of the tunnel – I am happy for them. It gives us all hope, but most of us are still in the trenches, no matter where along the trench that happens to be.
#8. As much as I am emotionally able, I plan to continue to write and to bring new information and support to all who need it in whatever stage of the journey they may be.
Jazzy, I think we lose patience with caregivers who don’t “get it”, because we are so tired and stressed. Honestly, this website is my best support system now. I can’t find what I need anywhere in the face to face community.
I find the same thing, less and less the wife and to overwhelmed to be anything else. I just watch to make sure he is well cared for in all things and no abuse. I did get tired of hearing the same thing over and over but like Charlotte, I find that the more experienced folks that I used to see on this site are gone. I just figured that they where moving on or were very busy with their partners. Since Kevan has been in care, I don't have to hide in my room but I am very lonesome and find that there is now no one to care for me. I just want things back as they were but that will never happen and it makes me just want to cover my head and just let the world go by. I have just lost my will to even try to move on. It's only been 8 months but I'm told it takes more time then that to walk alone. Summer is here now so maybe things will get better, maybe I will soon see the light at the end of the " not a caregiver anymore tunnel". I know I will never be a wife or lover or any of the thing I had in our marriage but maybe just being there will be enough.
Joan, I Understand how you feel, even though my husband has not been placed yet. I wrote some comments yesterday about how I feel about this site and what you have done for me, but I think only one person has commented on it so far. But I know, like me, there are others who read things but don't always comment. So, yes, Charlotte, I am one of those who joined around the same time you did but don't always post. I, like Joan, can't always express my thoughts on the days when I come here and read but the feelings I might have at the time don't allow me to post. I will try to post more from now on. Maybe, also, some people don't read all the discussions for the day, just the ones that might interest them. I think that's a mistake because sometimes someone might post something that is really helpful in another discussion that isn't read.
Charlotte, I want you to know that I always reAd your posts. You let us know so much about what's going on in your life and i appreciate that so much. So, please, don't stop coming here. I really haven't found that people we heard from back then aren't around much anymore. There are new ones. I do miss people like JeannetteB, but she's gone on with her life and I hope someday that can be me as well. But Divvi and Carosi and Vickie are still here and they still help me, and I'm grateful.
joan - I apologize. The phrase from caregiver to spouse is taken from what others have said after placement. I realize advocate is the big job after placement, but more a spouse than caregiver is what so many have said. I guess i read it all wrong.
I joined in Oct. 2008, a year before you, Charlotte. DH had been DX'd in 2003 and I didn't find this site until the summer of 2008. It was and still is, a lifesaver. Yes, many have moved on with their lives but I will be forever grateful to each of them for their support and concern for me - and others.
I read every new post every day. Sometimes I respond and other times I do not - for various reasons and sometimes, depending on the topic. Many times I have nothing to add to the discussion so I refrain from posting.
My life is taking a new turn, too. I still grieve for DH but there are things I must do, financially, to survive. I am 74, he was 90 when he died. Taking care of his needs over 11 years took it's toll on me, emotionally, physically and financially. I must sell my beautiful home, move to a different state where my only relative (sister) resides, to a small apartment. Totally different life for me! I'm trying to get myself ready for this huge change, and believe me, it isn't easy.
For you younger ones here particularly, my heart aches for you. This site, however, is the best place to come to. In years past, we always had a rope to hang onto. Someone would tie another knot in it for someone going through a very rough time at the moment. I have hung from that rope many times! Keep those knots tied and throw that rope out to anyone who needs it! It's our lifesaver.
I am one of those who reads every thread with new entries every day but do not comment very often. I have learned so much in the nearly 2 years I have belonged to this group that I can't begin to thank you all enough. But I have now reached a place that I feel I am in limbo.
My DH is now confined to bed with little to no speech and on Hospice so now its just a waiting game. Last summer my daughter and I thought he'd not live to Christmas but Christmas has come and gone and he has been reapproved for 6 more months of Hospice.
I often feel I should spend more hours each day in the room with him and keep him more stimulated but then I say I wouldn't spend as much time as I do if he were in a facility. Then my other self says yes but there would be more activity at NH that would keep him more stimulated even if I weren't there.
One thing I have learned from this group is that there is no one right way to handle a situation. I think that is one of the more important things this group has done for me.
Hi, I am Judy and have just been reading for quite a while. Thanks for your comments, Charlotte. It prompted me to finally post.
My husband has very early stage Alzheimers, frontal variant so a bit like FTD, with frontal issues, but he ALS has memory problems and it will become more and more like the slow progress of AD. He also has a brain injury from two years ago which accelerated his earlier MCI. He has poor verbal memory, poor problem solving and poor emotional control. His stamina isn't very good.
It is still pretty good as he is high functioning and can do almost everything on his own. I can leave him on his own. That said, he is very childish and irritable, very easily frustrated, very sad, nothing like the man I married. He lost his driver's license after his accident, but is reapplying and I am nervously waiting for the results which may take several months. Hopefully he won't get it back as he has very poor judgment, can't multitask and can't think very fast. Unfortunately, he thinks he can do all that.
I have learned so much from reading on this site. Thank you.
Hi all, I read here for well over a year before I finally joined. I found this to be a "bright light" in the dark tunnel In which I was travelling. Those here helped me so much. Even though my husband has died, I still come and read all the postings. I feel a strong connection to you all. I hope this site stays here for a long, long time. There will always be new members appearing since dementias won't be going anywhere soon. I can understand missing some of those that have moved on, but there are still so many here who want to support one another. Like Joan said, even if what you need isn't active at this moment, go back in the archives for it. That is what I did when I first came here. I looked up things I needed help with and was never disappointed in the answers I found.
My husband is gone and I no longer deal with that stress, but I really haven't moved on. I still NEED the feeling of belonging to a group who "gets it." Yes, we may all be at different stages of this horrible nightmare, but we are in it together.
From the time I joined this site I've observe a cycle of membership and support. We were very active sharing how to's and vents; research info and jokes. Everything provided an angle of understanding and support to each other as we lived with, cared for, and made our journeys over the Dementia road. It is all chronicled here. As many of us found it necessary to place our spouses we continued that support, as have those of us who have lost our spouses. New generations of spouses have joined and continued the cycles, and new generations after them. Many, after losing their spouses have moved through their grief and established new lives. Good for them. Some are still making their way through that level. BUT the bottom line is --all the support they posted Is still here to draw on. Each group participates a bit differently but that's okay--they are still helping each other. We'd all be in trouble if this growth and change didn't happen. My world is vastly different than the one I lived when I joined. Some of you know something of my story. I came to this site the wife of a multiply Learning Disabled man with Schizo=-Affective Disorder, and newly Dxd with Vascular Dementia--already Stage 5. The relief and support was mind-saving. This site was my port in the storms. Behavioral issues; driving; Drs.; you name it. My help was here. And I know I shared whatever I could that might help someone else. All that is here in the message boards. My DH developed an additional terminal condition, Aortic Stenosis, which took him in 2012. I told people then, "Ron's died and the way was a blessing. I'm okay." Shook many up, thinking I had lost it. The stenosis caused him to decline , weaken requiring more and more rest, until finall5y he rested himself away. No pain, no strain, no lingering. It's been nearly 2 years since, and I have done much to recover. I had been running on about 4 hours sleep a night for years---I now average 6-7 with an occasional skip each 6-8 weeks. All nighters were about once a week in 2012. My BP is significantly better, as is my sugar. My medical care is finally current. At the same time I lost Ron, we lost the house--downsized from a 2 bedroom with garage to a 1 bedroom subsidized apartment. Then he died and I dealt with the In-laws from hell for the last time. Between Jan. and March of 2013, I had 3 trips by ambulance. I stopped walking and began using my power chair fulltime. My Charcot-Marie-Tooth Disease has begun a new stage of progression requiring more adjustments as it steals my manual function and at the same time was the root of the permanent damage to my right knee. One day, In 2012 it occurred to me to wonder if there were any support groups for people with CMT. There'd been no time for me to focus on that idea for me before. There are several. I joined, and have finally, at age 64-65 had first contact via computer with other CMTers. Amazing to find other people with walking, falling, dropping issues. Sharing how to open packaging from hell; shoes to fit over orthotics , AFOs, KAFOs. I have relied often on the sharing learned here, to share my life experiences with newbies there--even as I have been a newbie there. Many of the Alz Spouse members have moved on--good for them. Many still touch base. Some throw in a post when they think it might help, even though they are no longer active caregivers. The evolution of this site is just that. It has grown, changed with new people and new information. It is not static. The support from all those who have gone ahead is still here--not lost. Maybe you can no longer speak with earlier posters, but they can speak to you , if you'll seek them out. I think you'll be surprised at how well they can still sustain you on your journey.
Charlotte, I've been thinking of you all evening, wondering how to tell you how special you are to me. You're like a breath of fresh air. An original. Not remarks that I throw out carelessly, so I hope you'll take then for what they are. I like you, I would miss you if you didn't post, please don't go away.
I read all posts and chime in occasionally with my negative attitude about the lack of reality by the ALZ medical professionals. I have always felt all you wonderful folks here understood and were never judgmental. For that I thank you. Before and after placement your posts have carried me through the shadow of the valley of the of the ALZ caregiving depth. If one sentence posted has helped some one lets keep posting and hanging in there for each other. That is all I can do because no one outside our world truly understands. Hugs to all of you and I sincerely appreciate all posts.
What a great conversation. I found this life-saving site in 2009, when my life was falling apart. I knew my DH had AD, although not officially diagnosed yet. I could feel myself putting up a wall around my heart and keeping my DH at somewhat of a distance. I haven't felt a lot of guilt about the ways that I've dealt with my DH and this disease, but that emotional wall I had put in place gave me serious guilty feelings. I googled 'emotional wall Alz disease" and this site came up. Since then I've been hooked. I read all discussions every day and have read many of the past discussions. I've learned how to deal with everything that has come up, due to Joan's Blogs and members' discussion threads. Although often I believe that I don't have much to add to what's been said in a discussion, I'll try to remember that sometimes all a member wants to know is that someone has 'heard them' and respond to their posts. I want to be more supportive of you all because you have seriously been a Godsend to me.
My DH is now in placement and I don't feel like a caregiver and don't feel like a wife. I'm not sure what I feel anymore, but I don't often feel that I have something to add to a discussion. I haven't moved on, in fact I feel very stuck. But I feel so blessed to have found this site and I tell anyone/everyone I can about 'Joan's place'.
Charlotte, You are always first to help others, you put your energies into doing research to let others know where to get information/help; you are direct and to the point (I wish I could express myself so clearly without so many words); your journey has not been an easy one, but still you stick and try to work things out, and this site would surely miss your input.
In our situation, though, I feel as Joan does. My husband is in a LTC facility, and, while I felt stressed and exhausted before placement, there has been no let-up – I don’t toilet him or have to do a lot of the other activities that were necessary when he was home, but now the emotional/physical stress – physical in that I spend 9-11 hours a day with him (my decision, but it just seems necessary now to ease some of the emotional pain he has been having, and the separation anxiety). They upped his night meds from 15 to 30 ml, and have prescribed Ativan on an as needed basis. I requested it twice, but the RPN mentioned that they have given it to him 5 or 6 times at night because he keeps trying to get out of bed, and also for anxiety.
I mentioned today that I need to buy him another sweater-coat, and he sadly said not to bother, that he won’t be around too much longer.
I don’t know how I would have gotten this far without the support of so many who have shared their experiences and advice. Thank you all!
So, it’s not easier after placement, just different.
I don’t post too often, but it is because I am sad/exhausted, and many times feel that my input won’t add anything, but this site is, for me, a life-line. After I get home in the evening I read all the new messages, no matter how tired I am. And your input, and that of others is so important. I hope you stay, but get the support you need.
I do not post too often but I just wanted to add how much this web site has meant to me. I check it at least once a day. I agree with Fiona68 that I do not feel like a caregiver and I certainly do not feel like a wife. In fact most days I am not sure how I feel. My husband was diagnosed in 2008 and I placed him 8 months ago in an ALF. When I look back before his placement I was like a deer in headlights--darting every which way and most of the time in an angry or panic mode. Now I have so much more peace. I am so grateful for my quiet house and the solitude that it gives me. For the first time I can actually begin to listen to myself without worrying about his needs. I have not stepped out to try new things but I know that I must proceed in my own time and in my own way. After 8 months I am at least beginning to become comfortable with my daily activities of working from home and doing the normal things that people do without guilt, fear, or a sense that I have to hurry to get back home with him. It is truly a miracle. When I first placed him I was always worried about the fact that I did not think they were doing enough for him or that there were not enough activities for him or he needed more food or the million other things that I thought I had to fix. Now I am just grateful that he is fed, clothed and safe. It is funny how this disease plays havoc with normal thinking patterns especially to those in the caregiving role. My husband is still pretty aware and I have been told that is both good and bad. Yesterday when I visited him he tells me he is bored. There was a time when that would have put me in a tailspin thinking I had to find things so he would not be bored but I was able to just nod my head and change the subject. After all I told myself that all children complain of being bored and he is not a child and not an adult anymore. What works best for me it to just take one day at a time. Not knowing how long this will go on depresses me so I have learned not to go there. For those of you out there who are on the fence with placement all I can say it has helped me immensely. The Medicaid process was long, exhausting, and humiliating but looking back it was the right thing for me. I realized that I do not need as much money as I thought and the peace of mind I have gained outweigh anything. I know that keeping him home would have destroyed me. I have the utmost admiration for those who can keep them home. I was not one of those people. Sometimes with this disease it has helped me to look back on the journey and realize how far i have come and how much stronger I am as a person. I have a whole life ahead of me and it will be without him but that is okay. God has a plan for me and I look forward to discovering it one day at a time. Happy Mother's Day to all
I am also still here, and post when I can or feel I have something to say. not as much as before but I do read here too. so many newcomers and its sad to see how many need the support we all have come to enjoy and crave here with fellow members. I feel like the 'last of the mohicans' as my story is very long winding and yet unending too. its been a very many years caregiving and DH is still with me, defying all odds. we are in a holding pattern waiting .. and we all know whats in store. its not like before when I was in the throws of poop queen duty and stressful every day. now its much easier and just ongoing. there are still many many invaluable members who check and read and offer advice when they deem they have something to contribute. like others say just knowing someone is there to listen is enough. members and their stories are a huge part of what makes this site a success. the archives are a super for any topic you can search out. many members have moved on and its wonderful to hear their new stories and life returns after AD for so many. it keeps us going. we are still here for one another even if posts have waned. love to see those veterans names pop up on occasion too. divvi
I joined this wonderful site in November 2008 when we were in the throes of crisis and I was unable to get any meaningful support from local resources, including the local chapter of the Alzheimers Association (a fact, not a criticism). I was desperate, overwhelmed that my once loving husband had become a violent, hateful man who had to be committed to a psychiatric facility with the possibility of never getting out. All the "professionals" urged me to place him and move on with my life. All this at age 57. It was too much.
I remember Starling answered my first post, advising me to ask the doctors if my husbands very itchy rash was scabies and NOT a drug interaction. Of course they said "no", but it was and had it not been for Starling's response I would not have sought out confirmation that it was scabies and gotten the much need relief and treatment everyone in the household needed. There wasn;t a question I could ask that someone hadn't dealt with before. I got great advice, support and understanding. Many of the early members were not only in the thick of caregiving for their spouses, but also "experts" in areas which were of interest to all...Jane with helping us understand social security policy and rules, among others.
Although my husband with bvFTD is somewhere around the equivalent of late stage 6 or probably early stage 7 now, I have fewer questions because we've lived this life for 6 years now. At one point recently I said to myself, when did I change from needing advice to being the one giving advice? However I visit this site at least twice a day and read all new posts to see where I can help and contribute. I feel a strong commitment to "pay it forward" and offer advice, support and understanding to those who are earlier in this journey than we are, just like Joan and the "originals" did for me. God knows, I could never have made it this far without the collective wisdom of the members of this site. This was and is the ONLY support group I've had and I tell everyone, including medical professionals about this site and how unique it is for helping spouses whose partners have dementia.
As Carol says, this site has cycles in membership and support. When I joined, almost every member was in the midst of caregiving for spouses in the earlier and middle stages. For those of you who have lost their spouses yet continue to contribute....you are gems who are treasured by all of us. You help us understand the second part of the journey-life after caregiving and loss. Your wisdom and insight is equally as important as the hands on advice you gave while caring for your spouse. Because each of us will be on that journey, too.
I've observed that many of the discussions now center around advocacy, support and caring for spouses in LTC and the sense of loss and emptiness the "well" spouse must deal with. The caregiving discussion nuances have changed and I think that in some way reflects what Joan herself is experiencing. My husband is still home, for now, so I'm still in the midst of being a hands on caregiver at home and feel that is where I can best contribute. But I truly value each members experiences and advice and will continue to read every day and contribute where I can.
Even though I lurked for a year I am one of the originals. Somewhere along the way a group of us became "the dirty dozen". We were able to interject some humor into our heartbreaking lives. Some posters became miffed at our shenanigans. That was certainly their right. We learned so much from each other. Some of us have kept in touch even though our dear husbands are no longer with us. I have found that most web sites change their focus as it matures-and that is fine, too. Joan's place is a source of comfort where people truly understand what is going on.
Rarely a day goes by when old Gourdchipper doesn't check in and read all the new postings, but as others have said, not being in the trenches anymore and with no new problems or experiences or solutions to offer, there's really not much for me to add. One thing I guess I could add is to reiterate advice that probably Starling gave me early on, back in 2008, that the caregivers who make it through this journey best are those who can believe that there will be an "After". I believed in and found my "After", even at age 82, and while it hasn't all been a bed of roses, it has certainly kept me too occupied to dwell much on "my loss" of my DW of 60 years.
WOW! I just wanted to sound off!! I didn't expect such an out pouring of such good advise and kindness to all if us. I'm so happy to be part of this wonderful caring family, and you are family. Our journeys are so different but so the same. I read a thread and as I go along I think this isn't any help to me but I keep reading and there I am, the same thing in my heart or head. Bits and parts of all if us on each page. Thank you so much.
At first I did not get it, until you described it in detail Jazzy. It is one thing to not feel any "help" coming our way, but when others just won't listen despite seasoned advice, it feels a waste of time. There is a woman at a group I was going to. Despite the fact that her ill husband had disappeared three times and the cops had to go look for him, she still insists he can go out for walks around the block. I wanted to yell at her. I stopped going.
I need to address also the OT subject brought up. I feel, I know, that no matter what stage we are all in here, we have so much to offer. The ones who have been there, have the knowledge of what time can do, and what has worked for them to help them keep going. The ones in the beginning stages can read up on all the extensive knowledge of us who have taken care of our mates, through slow decline , and very rapid, both which have immense challenge and pain.
I do not post much lately, though after some lovely comments I am going to try more, comments that perhaps I have uplifted, just anyone.I echo Joan, that the reason I post less is it is just too painful, I can read OTHERS comments and learn and hope for them. But even though my guy has been in Nursing care, (in 2 different places, ) for over a year now, oh, believe me, it still hurts , and in some ways more.
Yes I get more sleep.Yes I have more time, and I can go shop when I want. But, I miss him SO, I WORRY about him, does he need me does he miss me? And I FEAR the rest, despite not knowing just how it will end, I fear how will I be able to see him die., if that is the case?
And I find much comfort here, I read every day, and I will try to offer more.
We really need you and others both who have lost their loved ones and those who have them living in LTC. Your experiences and feelings help us to understand that what we are feeling and going through is normal. If anything about Dementia is normal!! I realized today from reading all the comments that having our loved ones in LTC is not easy. I couldn't understand why I am still having such a hard time. I feel just as much pain now as I did when he was home and I was having such a hard time caring for him. He is still just as nasty at times and sometimes so sweet. I would give anything to sit and watch our favourite T.V shows with him and have our cup if tea and cookies like we did for years but that is gone and the pain is so sharp that I just cry. Please keep sharing your hurts and pain as we need to hear it so we know we're not imagining this pain, it's real. It's Dementia pain.
Just putting in my two cents worth - and actually, most of the time, that's exactly what I think it's worth! I read, comment occasionally, but I don't feel that I have very much to offer. Dan's decline is soooo slow, at least for the present, I feel like I'm in limbo. I haven't yet been through what so many have dealt with already, although I've done a lot of "bookmarking" for future reference. I went to a support group exactly twice! When one of the other caregivers there seemed to want to psychoanalyze me, that was it. I still feel no desire to return. This site is it for me, plus one facebook group that I became a part of recently. Reading comments there from someone on the other side of this thing (the "patient") is helping to give me some insight. I think perhaps my own insecurities keep me from really feeling a part of any group. I'm the interloper, the outsider - not meant to sound whiny, just saying the way I feel. I have noticed a difference in participation, but it could be that I & others like me are part of the problem! There's a lot to be gleaned from this site, but it must be utilized to be useful (Mim says to herself!). Okay, maybe this is worth three cents! :)
So many of us people have been helped by Joan's board but Joan is still in it. She comes out before I go anywhere unless I'm told to go away. That's just me because I have an enormous penis. I mean gratitude.
Joan is cycling through this just as I am and all those with a star. When she gets safely through she can decide what to do because she IS this site.
As for Charlotte who I also care about, I would like to see a Charlotte's Web OT thread and I would like to follow her around. I still want to know what happened to the propane appliance that broke months ago. She doesn't have to but I would like that.
I think Joan might consider allowing the back half to expand. I would like to see a Biographies/Memories OT thread. Where we write how we met or our first date or the things we did or our feelings about our children or who gets a grandchild or any memories. This is important in retaining and reminding ourselves who we were and what mattered to help us with continuity and it lets us all peek and it encourages those who don't post to come forward. Posting (speaking your thoughts) is healing eventually I promise you.
I also want an Updates OT thread which is not the halloween names widow or widower. Updates on how Vickie and Bama and so many others like Carosi are doing where they're free to say they're moving or are thinking about it or what's happening to them and those histories do not fragment into the many threads but start gathering in one place.
In the meantime I will be annoying everyone where no one knows where I strike next - but the shadow knows. Ha! [throws black cape around and falls awkwardly off stage] Ow. Ow.
Wolf - was it the furnace? Once the converter was replaced for the motorhome (the old one was only putting out 7.5 amps and the furnace needs 12amps) it was better. But, it would still fire up then turn off. The day we had to pull out about 10 feet so the could fix the broken pipe in the ground, I discovered that the big propane tank we have was barely turned on. I turned it on more and the furnace was fine after that.
The furnace runs off the batteries, not 120 so that is why it was affected.
Charlotte - I always feel a "kinship" to you because you are a full time motor home dweller. We camped for over 30 years and I can just see when you have problems with your home some of which we had. I never had the nerve to go full time as a camper but admire those who did. We saw lots of country though. I know your situation now is not the traveling for fun type, I understand that. I don't post much because my situation is different than those still "in the trenches". Our journey was short compared to others so I don't have experience in many situations. We all still need each other though. I'll always be so grateful to Joan. She was a lifeline to a very scared old woman when I found her. Thanks and hugs.
To Florence and all of you who have lost your loved one to this disease:
We need you. It doesn't matter how long or how short your journey was, we need you. You are the only ones who know what we are going through. You can encourage us, console us, laugh with us and advise us. You are the only ones who can kick our butts and we know, you know what you are talking about. YOU JUST KNOW!!! I just hate it when someone says, I know how you feel, my Aunt has AD, or my Mom or my Uncle. They have no idea! Sometimes I want to scream at them and tell then just that. You don't know. My Kevan us in LTC now but I still remember how it was when he was home. I still can help a spouse with where to go for help. I can still help them learn what not to do or say to keep things calm. I lived that. I know the best LTC places for miles around. The ones to stay away from and the ones that are good. Just stay with us every now and then and pop up and just say "hi I survived". But if you feel better leaving us then say a prayer every now and then.
It is almost three years since Dave died. In some ways, it seems like it was yesterday, and in others, it seems like I have been alone a long time now. I wouldn't have survived without Joan's. The discussion groups kept me going. We had a place to ask questions on how to cope with various issues, and what to do to make things easier on our spice and on us....and to protect their dignity. We could rant, rave, tell jokes, cheer each other up, and became good friends. Some of us even became like family. I was one of the "Dirty Dozen" and am proud of it! Humor helped when nothing else could. And everyone was with me when I lost Diane, as we were with Vickie, and others who lost children while fighting this insidious disease.
I still read here occasionally. Not all of the time, because I used to read every day AFTER, and gave advice, and found my advice was ignored by the new ones, and so I quit offering advice. I felt I wasn't needed - that there were many others that the new ones listened to, and that was okay as well. I can't give advice for those whose spice are in nursing homes, because I kept Dave home until the end. It wasn't easy, and it wasn't cheap, but it worked for us. I don't know what you who have placed your spice are feeing and going through, but you are in my prayers.
I used to be a facilitator for a support group here at work, and it was very meaningful to me. However, after Dave died, I just couldn't do that any more. It was too painful.
I am very close to a large group of widows and widowers from here, and see them once or twice a year. We e-mail a lot! <grin> We have become even closer now. THERE IS AN AFTER! And it will be what you make it. If you want to spend your time being angry or feel saddened for not having your spouse with you, do so. If you want to remember the good times and the fun times, those memories will return and you can enjoy them. Each of us has to decide what we want to spend the rest of our lives doing. For me, it is loving my friends, seeing this wonderful world the Lord has given us, visiting with the kids, grandkids, and AZ spice, and enjoying the rest of my life. Dave and Diane would want me to do so.
I wish for all of you still in the trenches the courage and strength to survive - get respite, get legal matters taken care of, get everything in your own name, and work out how you can manage your financial future AFTER. You have come to Joan's seeking others who understand what you are going through. You have found the right place. Go back through the early discussions and you can find the answers if you need to. The past discussions should be in book form for new spice!
Do something each day just for you. Make time to pamper yourself each day, even if it is only 30 minutes of peace with a glass of wine and a magazine or book (while locked in the bathroom if need be!) or, if your spouse is placed, check into a hotel for a weekend and pretend you are on a vacation. Take good care of your own mental health, and remember you are loved.