I hope you guys don't stop posting on the other threads. I read all comments, no matter what thread they are posted on. Even if a comment does not apply to my situation, it often gives me something to think about, as well as a connection to the mind of another person who knows about the kind of thing I have experienced. And big deal if I happen to read a comment that does not interest me. (I might as well confess right now that I skim over all posts that talk about poop in any detail.)
Anyhow, I think the problem is too few comments, not too many comments.
Hey Wolf, where are these blind dates that I'm supposed to be going on?
I continue to read every posting by every person...just don't always have anything useful to add. If I feel that I can be helpful, I'll post something. If I'm just going to bloviate...well, I try not to waste everybody's time.
So we're going to have a frat house now? Wahoo! Just as long as we still have the Christmas Lodge. I don't think I'll ever want to give up stopping at the Lodge through the winter holidays. I got some new earmuffs in Canada...at a shop in the Chateau Frontenac. I'm going to wear them into the Lodge and cause a sensation this year!
Okay, I'll take the bait and break the ice with a hard admission about my AFTER. Back about seven years ago as I came to accept that my precious Frances was going to die and leave me adrift, I went on record on this message board as saying that I would be willing to risk taking on a caregiver role again in order to not be alone. This ran counter to what most spouses were saying -- particularly the female spouses. So what happened, I remarried and now it's seemingly coming back to bite me in the ass -- I've had to deal with my new DW's myriad health issues during most of our five years of marriage, and now she seems to be drifting rapidly into dementia land. But would I do it again, yeah, probably. But I'm afraid that this time, at age 88, I may not have enough energy, or patience, or enough love to take on a fully committed caregiver role again. With Frances's case, I had no alternative but to "man up" and make all decisions relative to her care, but with my new DW'S case, she has kids locally, and I've begun involving them in taking her to doctors appointments and making medical decisions, because I know that I will struggle with a decision to place her. Placing her will conflict with my expectations of myself, but I received a pep talk this past weekend from a counselor friend who has lots of experience with geriatric placement, and she made a pretty good point by saying that failing to place in order to spare my conscience or sense of fairness or something would amount to selfishness on my part. Point well taken.
Elizabeth, I'll put you down for a yes then. I presume you mean wear more than the ear muffs. If you want me to find where you talked about some kind of dates in your future I will. I would rather hear about it all in the fraternity house.
Myrtle, I believe this would increase traffic overall. My impression isn't that there are too few people willing to help. It's that fewer questions and issues are coming up right now. I don't believe people posting on the proposed thread would reduce posting on the board overall because I think everyone overall agrees with the seperation previously suggested by Charlotte. I support that idea.
My main argument is that this will be beneficial to everybody because it's as easy to skip over as a poop thread but I truly believe such a thing is going to help people here.
It's not my thread. No one can own it except Joan ultimately. It belongs to everyone equally who chooses to be there. It literally should be viewed as a beachouse/lodge/fraternity house because the idea is to eventually graduate but have the fraternity of our brothers and sisters.
In real words it is a place you belong to with people you already know are weird but to whom you are connected and just that alone I promise you will help some. Everything we bring to it for ourselves is healing because we really do belong somewhere and the lodge is similar but was crafted as a safe haven at christmas. This, in my mind, is a frat house. It's safe. But it's also more full of life. And it's continuous.
Jules is just one example of the majority who read what is going on but don't say as much. Their needs and their pain and their isolation are just as real as those of us who have the impetus to speak. Knowing there is a place that welcomes us as we are now is an invitation to share.
We can ask questions about afterwards. We can share our fears. We can say some things that happened. We can talk about our plans. We can play games which is good therapy for us walking wounded. We can share off-topic links. Joan's rules apply of course.
Gourdchipper, I'll put you down for a yes too. I'm sorry to hear that. I agree overall with the counselor.
Once again. Not my thread. Everybody's thread. I'll check in the morning and if it looks fine I'll start it.
Gourdchipper - sorry to hear this disease is hitting you again. I agree with the counselor - you need to not fight placing when the time comes. As you know, you can still love her and care for her without the stress that will rob you of your health.
Gourdchipper, I am so sad to hear this news. What rotten luck. I agree that your wife's children should be allowed to bear some of this burden. It is their right and they may see it as their chosen duty. I know I would. Cross the placement bridge when you come to it.
Wolf, Are your members alumni or fraternity brothers?
You know as a relative newbe it is not easy sometimes as all of you who post a lot seem to already have your relationships and it is like you are trying to break in to an existing group of friends. I certainly don't mean this in any way as a criticism could be just the insecurity of a newbie. Don't get me wrong this is nobody doing anything wrong or on purpose it just can be a bit intimidating especially for those of us that are a bit fragile from what we are going through. Not asking you to do anything different as i have said this site has been a huge help to me. Now I fell I shouldn't have said this as all of you have been very welcoming and supportive. Bottom line may take time for some newbies to feel comfortable to put themselves out there.
Yesterday was our anniversary but since we had a battle in the morning as I was trying to get Lisa to the day program thought I would just postpone it until today. Program went well by the way and when she came home she wasn't mad at me so that was good. Well today brought flowers and had reservations at a very nice restaurant. Had a glass of wine prior to going but at that time could tell she was really off. Should have known. When we got to the restaurant she was very happy but completely out of it. Had to help her with her meal, started eating her salad with her knife, had food spilling All over, had to cut up her food and help her, the table cloth had a huge floral pattern, so she kept trying to pick up the flowers on the cloth with her Fork and I had to keep redirecting to her plate. Worst I have seen and Oh boy not what I envisioned. She likes her wine and I don't know how much this plays into it she did't have that much and it is the one thing she still really enjoys. Do others have spouses who still have a sip? Is it a bad thing? My feeling at this point what does it matter a little bit is ok if she enjoys it.
You are not alone. When I joined in 2009 I too felt that way. Back then the site was very busy with postings because the majority were in the thick of things and had been here since it started. I did a lot of reading and posted some when I thought I had something to say. Because my husband was in the early stages, not much was going on. He is moderate now and still just slowly jugging along. I guess because of the education I received here, I learned more about AD than I ever wanted to know, so nothing new comes up.
Back then and actually probably up until probably a year ago, there were still a lot of post. People would start new threads sharing experiences like you just had at the restaurant. So please do post even when you think the experience is not that important. Remember, even though people are not posting, there is someone out there lurking that might have had a similar experience and you are letting them know they are not alone. If you don't want to put it under a new thread because you want to share, not really looking for advice, then post under the monthly postings.
To be honest, even though I have been here 6 1/2 years I still at times feel an outsider which is nothing new for me. And now since most of the postings are from those who have placed and or their spouse died, I am outside looking in at their group. So those of us still with our spouse at home need to get brave and start sharing.
Wolf, if it can be thought of as a beach house...then you better believe I'm there! Frat house sounds a little intimidating to me. All the partying and alcohol. I was always such a good girl. But a beach house is my kinda Heaven on earth! Not intended for you to change the name...just sharing what, in my little mind, I will be imagining. Start it up 'ole boy!
Rona, I have been on this site for a little over a year and I agree that it can appear to be a little cliquey, but I don't think that is intentional. I think some people do not realize how intimidating it can be to communicate your problems to total strangers. When I first posted, I asked for specific advice and was told to search the boards (which I had already done) and I was a little put off. Fortunately, some members started responding to my question so I gained confidence. Also, I think the success of the site has made it cumbersome. There is a long list of obsolete "stickies" that distract newcomers from the current discussions and although the search engine works well, it's not always evident to those who are not familiar with it. In posting comments, people sometimes forget that not everyone knows each other in the same way. Sometimes you see posts where people refer to each other by what are apparently their given names, rather than the screen names used here, which makes it seem that some members are in a special circle. There is also a Facebook page (mentioned above by Charlotte) which is secret or private or something. Despite these issues, however, the site is very valuable. I have learned to trust it and to regard the members as my friends. They have never steered me wrong.
Rona, Until my husband was admitted to LTC, I took him out to eat at least once a week, mostly to give me a break from assembling meals. (To say I "cooked" meals would be an exaggeration!) However, we would never go to a nice restaurant. We went either to a local pub or to a casual dining place. (It helps when the menu has pictures of the food.) I often ordered a beer for him. I think he enjoyed the idea of the beer more than the experience of drinking it, since it made him feel that he was just a normal guy.
I to felt very out of place. I was still working and DH was only 58 at dx, I was 50 and we had a 13yo DD at home. Along with the time frame. DX in Feb of 2010 and passing Dec of 2013. I did not fit in anywhere. But the help I found here was awesome. You all kept me afloat. And I thank you for that. I still check in every day, and my heart truly breaks for each and every one of you.
I want to say it does get better after. I still have my days. I miss my DH with all my heart. I feel that my heart has broken so much it is dust now. But I keep moving forward. I have a new grandson who I get to see often. Life goes on....
For those of you longing for the good old days when we had a benevolent ruler, the majestic Poop Queen, here is an update from the trenches:
7:30 a.m. I didn't know it but Jim had a massive bowel movement in his diaper sometime this morning. I guess I shouldn't linger in bed in the morning just in case he has to go. Lesson learned, unhappily. It wasn't runny, just a lot of creamy pooh, in the diaper, on his shorts, on the bed pad, running down the side of his guard rail, lots dried onto his buttocks, between his legs, up his back, on his stomach, in every crease you can imagine on a 325-lb man. You haven't really experienced all life has to offer until you've scrubbed dark brown poop off of your husband's hairy testicles. I washed and washed and washed him, pieces of pooh down the drain for at least 10 minutes. Can't show disgust, have to smile and act as if nothing is wrong. Any reaction starts a chain reaction from him which needs to be avoided. And the smell. Throughout the entire house. I threw the shorts away. The morning caretaker gave me a big hug because I was standing in the bathroom with my head hung low. At first she said, "well, you still have a roof over your head," very similar to what my mother would say whenever I had any reaction to a problem, "if this is the worst thing that ever happens, you're lucky," she'd say. Hated that. But the caretaker saw quickly I was just overwhelmed.
I am kind of a fanatic about germs so of course, now every day, I clean up poop and pee and worst of all, believe it or not, spit. Spit makes my stomach churn. Writing the word spit makes me queasy. As I was cleaning the poop up today, I was thinking about how dangerous poop was and whether or not I was getting it all over me as I was spraying it off my Jim. I wore gloves, but I'm still wearing what I had on and I didn't wear a mask. I'm probably growing a couple of dread diseases on my shirt right now.
I do think about that bible verse "they will pick up snakes with their hands; and when they drink deadly poison, it will not hurt them at all; they will place their hands on sick people, and they will get well."
For me?
"I will wipe off poop with my hands, and when deadly fecal material gets on me, it will not hurt me at all; I will place my hands on poor sick Jim, but he will never ever get well."
Bunny's Lamb, I know it isn't really funny, but I have to say - you just cracked me up!! You're a very descriptive writer.....
As to the others who have a hard time "belonging"....I still feel that way at times. Nothing anybody else has done wrong, I think it's just me. I really was the outsider when I started reading this blog, not so much now, but still feel that I don't have a lot to offer. Like Charlotte, it's a long slow process for us (at least so far) & I can't relate to placing your spouse or the passing of a spouse. Unfortunately, I'm sure someday I will...& then I will go back to read through those threads.
I can empathize & sympathize, but those are things that one cannot relate to till they've walked in those shoes. I always used to say it's like having a baby - you can read about it, & talk about, but you have no idea until you give birth!!
I think the reason that I have not checked in in a while is I am treading water. My husband is in the NH and has been there since January. He has gone into a very angry stage and he rages at me because I won't take him home and it has just exhausted me. I have cut down my visits and have started back to work teaching English and Ancient History. I just had to find something that would stimulate my mind. My life was being overtaken with ALZ and I actually have felt that if I didn't do something constructive I would just die. There are just no words for the horror that this disease brings and often I think...what else is there left to say? People are always asking me how my husband is and I have no answer because I do not have any idea. He is a different person every time I see him. His rages make him very difficult to visit. The minute he realizes that I am not going to take him home he gets angrier and angrier. I take a mental and emotional beating every time I go to see him. It literally erodes the soul if you let it. In a nutshell...I am WEARY.
Bunny's Lamb, you are an amazing writer. For those of us who have walked the walk, your descriptions were spot on AND hilarious!!
I try to remember that there are many people on the planet today living in squalid conditions without sanitation who will succumb to diarrhea illnesses. I picture the poop that those people must deal with, without running water, gloves, or Clorox - and although some die, many flourish. They don't have the autoimmune diseases we do because their autoimmune systems are kept very busy with their dirty environment. And they develop immunity to diseases that would kill us on the spot. Everything is relative.
Also for those of us who grew up around farms as kids, you learn to kind of accept poop. It is everywhere, smelly and slippery; shovelfuls of glop. It is a fact of life, just like. . . My husband is in a dementia unit, and I shudder to think of the E.coli that are growing on every surface, but I know are there.
Ah, dellmc53, so sorry for your situation. You are wise to have an outside interest because you can't control your husband, only the way you deal with it, and sometimes distraction is the only way to survive. I hope your husband moves out of this stage soon. Posting about your situation and feelings helps not only you, but all of us.
Rona, You are not an outsider. Everyone who participates here whether by posting or simply reading is a member of this wonderful group. Post whenever you feel like it, and I am sure if you are seeking help or just some sympathy, someone will come along and reply.
Bunny's Lamb, Your post was so descriptive I felt as if I was there with you cleaning up that horrendous mess. I remember them well. I love the concept that "at least you still have a roof over your head" - I will try to keep that in mind. Thanks for sharing.
dellmc53, So sorry for what you are going through. As marche said, hopefully he will move out of this stage soon. I am so sorry for all the distress you have to go through every visit. Glad to hear you returned to work - hang on.
I am so very sorry to read about what you are facing. I agree with others that you will need help and should accept whatever is offered. At least you had the courage to try and build another relationship that's more that I would ever have. Keep us in the loop and I wish you well.
I have thoroughly enjoyed all the posts. Like many others I was very insecure posting my issues in the beginning and it did feel like I was an outsider. But honestly as the disease progressed I got enormous support Near the end he was so agitated and someone told me about how their husband passed from terminal agitation and as she described her husband's symptoms it was like describing my situation. She told me he passed quickly and that gave me so much hope at that moment that it would soon be over for me too.
Dellmc53, you hang in there. I am so happy that you found some outside interest for yourself. Keep up the good work. This too shall pass and know that you have support here.
Rona, please keep posting. I for one enjoy reading your posts. I took my husband out once a week too until it just became too much for me. But do it as long as you can because it will build good memories for you.
Gourdchipper, sorry about your situation. You are about the only person I know who has remarried. What you are experiencing is my biggest fear that I would have to go through this again if I remarried. Once through Alzheimer's is enough to last a lifetime. I wish you well. Getting used to loneliness is a hard thing but not as hard as what I went through. But then everyone is different.
Mim - I, too, have always felt like an outsider. My husband was 55 when diagnosed, I am younger than he is. I'm not a joiner, more of a lone lamb kind of girl, so it's hard to connect with anyone. Plus, I feel the need to edit and try to find humor because this is just so gawd awful.
dell -- man oh man, you are going through exactly what I fear will happen if I place my husband. Even if it is the only option, I don't know where I'd find the guts to handle the rage and the demands to come home. I, like you, have started working again, but it's just another stressor at this time. I think you are brave to keep walking, brave to keep hurting, brave to know that nothing good comes from any of this but still on you go. What you described makes me shrink inside and want to run away. Knowing that you are doing it, even so weary, even horrified, even in despair, shows me that it can be endured. Brave. That's what you are.
Marche - I stopped going to movies because I kept wondering if the person who sat in the chair before me had head lice. I have nightmares about public restrooms. I stopped watching MLB because those guys just WON'T STOP SPITTING! I'm beginning to understand the whole Howard Hughes thing. So imagine my surprise when I discovered that handling poop and pee isn't that bad. I just snap on the gloves, turn on the shower sprayer, soap up my latex fingers and get busy. It's only really bad when I think about it. So I try not to too much.
I come on the site nearly every day. So much help and understanding.
Bunny's Lamb ----I can handle the pee, the poop just undoes me. I feel like our house smells like an outhouse. I am much older than you, but if I can't find humor in a situation, it makes it even worse. Guess some people find it strange.
Wolf----A beach house sounds great. What can I bring?
I am having a "vacation", Johnie is in rehab hosp until next week. I feel guilty because it is so nice to be home alone.
I have most legal papers (I think) in order, but going to go see an eldercare lawyer, to make sure. Are they very expensive.
I made the mistake of calling about assisted living apartments and I think everyone in Texas has called me. I don't think they have the kind of help I was hoping for.
Bunny's Lamb, we are MUCH older than you are - my husband is 80 & I'm heading for74 at Christmas time (don't even want to think about holidays!!!).
I've never been a joiner either, was always content with solitude, of course not exactly a hermit! But it is hard to share things sometimes & to find a "fit" somewhere. I've surely had my moments of sharing here, though & of confession & venting - it helps.
I also find humor is a big plus - of course many times I don't find the humor until after the fact, but I do try to find it. Keep on, girl.....
I joined this site in the summer of 2008 while my husband was in the process of being diagnosed with FTD. I did post more then as I was scared out of my mind. I am 9 years younger than my husband. He was diagnosed when he was 58 and is now 66.
A lot has happened in these past 7 years...my husband going on disability, stopping the driving, bankruptcy, moving, etc.
He is still home with me and attends day care three days a week. They are a lifesaver for me as I am his only caregiver. He is nonverbal, doubly incontinent and very slow on his feet. But he still gives me smiles when I pick him up from day care and hugs when we sit on the couch.
I don't think I ever thanked you for bringing me to this site. Back in 2009/10 I was searching the web for information on FTD. I looked up a multitude of aspects of the disease. When I moved to the "stages of FTD" your post to Joan's site came up. I copied that list and found it very helpful over the following years.
Once I was introduced to Joan's, I came here every night after I got my husband in bed. I went back in the archives and read, read, read. The information was amazing and it somehow comforted me. Many nights my reading would be interrupted because I had to put my husband back to bed over and over again - some nights a dozen or more times. But I was persistent in my quest for information, and after each time, I would come back to the screen and read more.
So, thank you Deb, and thanks to everyone here for all your help over the years.
I'm glad I was able to help at least one person find what they were looking for. I know I googled my heart out at the time of my husband's diagnosis. I believe we all know about FTD/dementia than most doctors do.
Goodness, I don't even know where to start, and I'm in Colorado struggling with computer issues...couldn't even get on our site yesterday...but managed it today. Wolf, I don't think I ever talked about dating. Can't even imagine such a thing, much less a blind date. Yikes, and of course when I come to the Christmas Lodge (or the beach house, or the Starship Enterprise, or wherever this group decides to get together virtually)...I will be wearing my Canadian ear muffs along with the usual six layers of winter gear. Well, if it's the beach house, maybe it will be a muumuu. Whatever.
I'm just astonished by the number of people saying they feel like they don't belong, or that the boards are clique-y or whatever. Good grief, we are all here for each other. Unfortunately, we all belong. And wherever we are on this journey, whether we're still up to our ears in poop, or struggling with the behaviors, or the general misery and loneliness...or whether our LO is home making us nutsy, or goes to day care, or is placed, or is down in the cemetery...we are all comrades together having fun here in Happy Hollow (yeah, a little black humor there)...there is certainly no "in" group or "out" group...we all belong...whether we like it or not.
There is just so much need here. Gourdchipper, Rona, dellmc53, Bunnys Lamb, bobbie, deb112958...I read every post and send all my concern and encouragement out by ESP. Lots of hugs (((((()))))). And where I can chime in with practical ideas, I will do that.
Regarding the question about alcohol, I found that Larry, who had always had a drink every afternoon, continued to enjoy it well into the dementia. But I think it was more just for the idea of it than for actually drinking it. He liked to have that 4pm Manhattan at his elbow, or in hot summer weather, a bottle of beer. A lot of times he would only take a couple of sips, or forget that it was there at all. But it made for a continuation of the way we had always lived...it was comforting and familiar. We had always eaten out at least every couple of weeks, but that just gradually tapered off and stopped as he just became less and less able to cope with it. Rona's experience pretty much sums up why I stopped taking Larry to restaurants. It just became too difficult, and I felt that it took away from his dignity.
I wasn't sure what to think about so many people feeling like they don't belong. . . and then I began to have doubts of my own.
Then along came elizabeth* with some well needed clarity and a rap on the knuckles - like a wise and seasoned teacher walking into classroom chaos and with one wave of her hand, Presto! Paranoia banished, order restored, and (best of all) we all feel once again like a group. At least, it worked for me. Thank you.
Elizabeth, it wasn't that you were going on a date or a blind date. It was some reference about possibly going somewhere with a friend as I recall. However, I apologize and will switch because that actual topic was unimportant in my post and I will change that to possibly moving to New York.
Not many of us open up and talk about stuff. You're one of them. I don't get to vicariously ride along with my own talking or learn that much from what I already said. Only when others do. That was my point. Sorry about that.
Elizabeth when I originally posted on this thread I wanted to reiterate that I have always felt welcome and everyone has been very helpful and nobody is trying to be cliquey, it is just for some whatever new experience there can be a bit of fearfulness about putting yourself out there. I certainly didn't want anyone to feel bad. Not everyone is an extrovert and not everyone can just lay themselves bare right away. Their comments about feeling like an outsider were all in the past tense and I believe it is just part of the process of becoming comfortable and nothing more. We are all in this together.
I am sure there are people out there who have been on this site for along time who have never posted, it is just who they are. I like others would encourage them to do so, it can be a bit scary at first but take that risk, it is worth it.
Hello from the old poop queen herself. friends, its been a very long road since my dearest husband passed now 9mos ago. one day you think you have turned the corner, then something reminds you of the days of poop queen and reading at joans several times a day and posting the oh so dreadful posts that make folks cringe. btw- Bunnys Lamb, I pat you on the back dear friend. you have taken up the crown and I fear now will wear it bravely til another deserving soul comes along bold enough to post. humor has always been the lifeline while trying to weave our way thru the AD world. without some chuckles along the way, I would have succumbed to the disease right along with my spouse. I haven't been able to come and post as I would like. its very difficult to return and visit much less post after being a member for so very long. half of our AD life, I was a member here and half I maneuvered thru without any support. its wonderful that so many new members have found their way. like others say one becomes rather stagnant after placing or losing their spouse. and of course I must say that the reminders here of the pains, fears, and stress one goes thru during the role as caregiver is just so overwhelming. many cannot bring themselves to visit and offer support due to their own reminders of how things used to be. I am among the many. I do read and hope that as time advances I can join In more in the discussions again. its good to see old names, and new ones...... but only we as a select community can appreciate the friendships made during our years here with those we have come to know. please forgive my absence but I also am working thru the grieving that has its own agenda and timeline. I am sure there will be many helpful posts from current members and will be so very useful to those who come behind. its good to say hello to all the warriors who are still here and in the trenches. sometimes it feels like the easy part for me was being a caregiver.. oddly the 'after' has its own set of very real dilemmas. take care, and may each find their peace. Divvi*
I am the one who used the word "cliquey" (if that is even a word) but I did NOT say that "the boards were clique-y." I said the site "can appear to be a little cliquey," but I did not think that was intentional. I also said that I thought some people did not realize how intimidating it can be to communicate your problems to total strangers. This was after Jazzy asked where had everyone gone, and others said they felt they did not fit in, or had been insulted on "the Facebook page" (whatever that might be), or that they had nothing to offer after their spouses had died, etc.
I think we may be back to the introvert/extrovert discussion that has appeared here before. At one extreme are those who rarely feel they fit in (whether in these discussions or elsewhere in the world) and on the other extreme are those who feel comfortable anywhere and think that if you feel you don't fit in, you must have an attitude problem. Although I feel I belong on this site, I am on the introvert part of the continuum and understand those who feel that they are standing on the sidelines.
BTW, does anyone watch the British comedy, "Doc Martin," on PBS? Talk about shy and introverted!
I know what you are talking about Myrtle. It was not the people here, it was me. I have always felt that I have never fit in anywhere. Just me. Also at the start, with DH and the dx I was very angry. And everyone here was so understanding and helped me work through it all.
There have been other times when the group has been quiet.
I have never posted before but I have been reading this site for over 2 years. Somehow I found it when I was searching for issues related to spouses of those diagnosed with Alzheimer's. My DH is considered early onset having been diagnosed just after he turned 58. I am 8 years younger than him and quite honestly did not necessarily connect or relate to many of you as I am still working full time and had 2 children still in high school/middle school at the time of his diagnosis. My job is very stressful and demanding and it has been all I can do to just perform at work and come home and deal with everything here. I didn't really feel like I had much to contribute but I see that I can at least provide encouragement. I have used this site not only for education but for advice and counsel even though no one knew me. It's not easy for me to open up and say what I feel so it is a little intimidating to open up so personally to total strangers. I have tried to find a therapist but I have not had much luck finding one who has experience with spousal issues. That is what I have found to be most helpful here. It is purely from that perspective and it is not the same as your mother, father, aunt, grandmother, etc. having Alzheimer's. It's totally different and everyone here gets that. I have found great solace in that and it has sustained me at times. I am 3 years into this and feel like I am physically and emotionally exhausted. I don't really know how I will get through it but probably just like everyone here. You just do. I hang on by a thread and try to keep some semblance of normalcy for my children, especially my son who is still at home. It's hard and I wish I had help. I realize everyone here is/was in the same boat. Be assured, there is not a shortage of people who have contracted this disease and the spouses who are along for the ride. Thanks for all "you" do!
Sass, When there are children at home that makes the ALZ monster invasion doubly sad. Your physical and emotional exhaustion is familiar to all of us. You won't be a stranger here. You will be a "family" member. My DH has been in LTC for 4 1/2 years and the good people on this forum allow me to complain nonstop about the "professional" caregivers. We are all here to "listen" and extend support.
So great hearing from you. Thanks for all your help over the years. You did serve with a "spoonful of sugar" - making us all laugh.
Sass,
There are some members here who have younger children. One in particular (samismom22) posted a news report that was on tv - I'll bring it to the top for you.
Hello again, everyone. I'm still fighting with my older daughter's Internet here in Colorado---can't get my laptop into her system at all---and she has an ergonomic keyboard on her computer that is the weirdest thing I ever saw or tried to type on. Anyway, I'm reading all the posts--welcome, Sass---and in terms of cliques or not belonging, I think we pretty much said it all (no cliques, everybody belongs, hugs all around)...I am having a nice visit with my older DD...she will be 40 in November. She's been disabled since her late teens, and just lives quietly with her cat...very reclusive, doesn't travel...she case manages herself very well with the support of her health care team and some backup from the Colorado relatives. It is nice to have the freedom to come and see her now...I used to hire 24 hour care for Larry when I needed and/or wanted to come out here. We are kind of on the culinary tour of the town...haha...never mind the weight of my bag on the plane...the weight problem is myself. Oink. Anyway, I'll be back in the Heartland tomorrow night.
Hi Sass. Sounds like you have a whole lot on your plate. I cannot imagine still having kids at home and dealing with the AD monster. Glad you found the site and that it has been helpful to you. Thx for speaking out from the shadows. Welcome!
I came rolling into the drive around 6:30 pm, Mim, and went right out for a good leg-stretching walk in the park. Boy, do they ever squish you into those airline seats. It's literally like being a canned sardine. It's good to be home--can't wait to hop into my own bed and sleep, sleep, sleep.
Sass When my DH was diagnosed, we had two children at home. They are now married. He was 56, when diagnosed. I am 9 years younger. It was so hard. I am now dealing with him in hospice and last stage and last days. my DH is now 63 years old. This site has helped me so much and I know will continue to help me after he is gone. I am so sorry that you had to find it. Sending hugs
AliM, Moon*, Aunt B, and jackiem29 (hopefully I got everyone), Thanks for the welcome and encouragement! It will be good for me to reach out more to people and communicate what's going on. And it helps knowing there are others like me. :) My DH is 61 now and I am 53. My son just turned 17 and is a junior in high school. I have 2 older stepchildren (30 &27) and a daughter 19 in college now. The children are all his so they all have the same father. The oldest is married and just had twin boys. It's wonderful, exciting and somewhat bittersweet. She's the only one he will probably walk down the aisle (3 girls and one boy) and the only one who's children DH will ever see (or somewhat know). He knows the boys are her babies and he gets excited to see them and pictures of them. His decline just seems so rapid. His prominent issue is primary progressive aphasia so he has extreme difficulty communicating and its getting worse by the day. This has been the case for almost the entire time, so that has maybe been the most difficult part to deal with. For almost 3 years I have been the interpreter, the mind reader and the one to carry on his conversations since he cannot. That's what can tire me out the most. I wish I could retire but that's not happening anytime soon since I carry the load. So there it is...my "daily dump" to my newfound kindred spirits. I'm so glad I found this site!
Sass, I got the evil eye from lots of folks when someone would ask my DH a question and I would answer. They probably thought I was a bossy old woman. DH has only spoken a few words in the past five years and it is frustrating. When I visit the SNF he just stares while I rattle on with my talking but feel like I am talking to the wall.
Losing the loving grandparent to the little ones is just one more horror of this disease. I can't even read that book that is so often recommended ("Grandpa Doesn't Know Me Anymore.") I just dissolve into tears. Larry was so good with the first grandchild, and still able to interact with the second. With the third, Grandpa was still in the picture, and still using his walker, but was more like a benevolent figure in the background than someone actually able to be involved. By that time, we were all together in the rental house, DD and s-i-l said that if nothing else, the grands were able to see an example of family trying to work together to help family. By the time Larry really hit the skids, he and I were in the little house I purchased, and we shielded the little grands from the agitation, poop, etc. Once he became comatose, DD and s-i-l would bring the grands over to see him...explained things to them on their level..."Grandpa is sleeping because he's getting ready for the angels to come and take him to Heaven to live with God." Etc. etc. ('Tears again. There are no words to describe how much I hate Alzheimers.)
Alim, I do & get the same thing. When Dan is asked a question, I seem to automatically answer for him. I'm sure many think I am a controlling, bossy old woman. A couple of times, someone stopped by to visit him this summer when he was sitting on the front porch (he's there as much as possible, thank goodness). I knew they were there, but did not go out, just let them chat (?). I noticed it didn't last too long! I'm assuming they realized something was just not right.
As others have noted, I too am in a different place now and do not come to this site as often as I once did ... and it's been a long time since I posted a comment, although according to my account page I have posted nearly 500 comments over the years! I still recommend this outstanding site to others and people new to this site should definitely mine the old discussion threads for extremely valuable information. And for those not in a regular and helpful support group, this is the best "virtual support group" you will ever find!! Even when I attended weekly support group meetings for 3 years, I still often found very helpful information here. As of June I've had my own blog site on The Huffington Post where I started posting weekly for the first ten weeks but am now posting new pieces every other week. New visitors to this site may also want to check out my blog site at www.huffingtonpost.com/allan-s-vann. And I'm sure that once Joan gets settled in she will get back to those who are new to this site and have posted recent comments.
AliM and Mim, I haven't noticed getting the evil eye (but maybe I have and was oblivious!). Mostly, my DH starts to attempt to talk or it's all general, lots of "they", "there", then he turns and looks at me and then whoever he's trying to talk to also looks at me confused because they don't really understand what he's trying to say until I finish the sentence or story and DH says "yeah!" If he calls someone on the phone or they call him it's worse. He tries to talk and quickly realizes he can't carry on a conversation and the next thing I know, there's a phone in my face which signals he wants me to talk for him and he sits next to me and listens. I let him start or try and then people quickly find out something is amiss. And we motor on...