Am I looking in the right place? I click on your name as it is highlighted on your latest posting, and underneath your photo, this is what I see:
Emailn/a Account CreatedJan 2nd 2009 Last Active44 minutes ago Visit Count2952 Discussions Started49 Comments Added4242 Ageshb 65 me 60, married 43 yrs LocationNevada currently Diagnosis3/2008 dementia of the alzheimer type First noticed symp.2006 short term became bad, symptoms may have started years ago with personality changes Occupation beforeHe was a printer, then we became Workampers Children/grand2 children - 7 grandchildren
I now live in Tulsa Ok. Moved here three years ago when my DW went into the nursing home so our two children could see there Mother more often. They are busy working and raising families and couldn't make the 300 mile trip (one way) to see her very often. When my son said that he wanted me to bring his Mother closer so he could see her, I found that touching and I did. It was the right thing to do at the right time even tho I would have preferred to stay where my home and friends were.
We live in a small but beautiful community in rural Quebec, about an hour and half drive north of Ottawa, Canada. I'm new to this site and still trying to find my way around.
LindaMc - Decided to look through these posts & there you were, replying to me (even though it was in Feb. ! Sorry to be so behind!). i've been following your posts - I hope & pray that you are managing as well as possible.
We just moved to Chicago to be closer to our kids. A good move for us, but can't find a support group that I want to attend. Does anyone live in Chicago?
At the top of this page on the left is an area that says" start a discussion. Try putting you request there. Say something like" looking for someone who lives in Chicago" That may get answered faster. I don't live anywhere near there.
Welcome to the site. It is a great place to stop and get info and hugs
I live about 1 1/2 hrs south of Chicago in NW Indiana. The support group my hb and I met with is in West Lafayette--too far for you, but a wonderful group that I still meet with from time to time. Meeting them for lunch in a couple weeks. Purdue U. speech pathology interns meet w/"clients" for conversation and art/music activities and prepare a memory book w/photos shared by family while caregivers meet together separately w/experienced facilitator for sharing, encouragement and discussion.
I am down the shore till September. My house is an hour south of Spring Lake. But, my main home in Staten Island is not that far from you. Maybe we could find a way to meet in New Jersey sometime.
I have just joined your group. Was told by a lady at ALZ. Meeting it was a good place to look up people in the same situation as my husband, who has ALZ. and me. I don't even have a clue what type advice I need. Guess I'm just tired. We live in Livingston, TN. He is at home. I take care of him by myself. Has had ALZ. approx. 8 years. Thanks for allowing me to comment.
Carolyn, Welcome. I am in the neighboring state of North Carolina. I live in the northwestern area in Blue Ridge Mountains. You were given excellent advice to join the family here at Joans site. My husband is in a nursing home but you will find spouses here who are caregiving at home and spouses whose loved ones have passed on. Excellent advice, understanding, caring and absolutely no judgement of anyone is what you will find. Just start a discussion on any subject of this ALZ monster that you care to and kind folks will respond.
Alim, Thanks for the reply. Alan, my husband, used to work for a company that transferred him to NC. We thoroughly enjoyed our stay in your beautiful state. We lived in Winston Salem. We just acted like tourists on the weekends. Took a drive in the fall of the year down the Blue Ridge Pwky. to look at the colors, not thinking everyone else would be doing the same thing, and with no thought of a hotel reservation in Asheville. Found there were no hotel rooms available as far away as Knoxville. The Red Cross had set up shelter in a junior high school gym and that's where we spent the night. It's funny now but not so back then. Oh, how I miss the sharing of memories with Alan. Thank you for allowing me to share this one with you.
welcome Carolyn! you have joined a wealth of info for spouses with dementias. its a place to get informed, see how others are coping, vent, and just get a hug when necessary. happy to have you on board, although like many say none of us want to be here. but thank goodness its here! divvi/tx
No Carolyn, that is why this site is so valuable. Most people think it is just a memory problem and because he still looks fine, he must be fine. We all know that is not true.
Hi Charlotte, Just had a friend who is a surgical RN and his precious wife visit unexpectedly. He and his wife, Barbara, thought I had lost a lot of weight, was concerned with my health and thought it was time to think about a nursing home or facility for Alan. I don't want to do that. Would rather hire help to come to our home. When and how do you know, "it's time"? Is it possible other people can see things we've blocked our mind too?
Carolyn, welcome to our group. To answer your question, is it possible other people can see things we've blocked our mind too? The answer is YES. An example - My daughter was doing the care giving for her father about a month ago, for a four hour period. Included in that time frame was entertainment (a trip to the movie theater). Her comment afterwards was that she couldn't understand how I could look after my DH all day, every day, as she had difficulty with just 4 hours. I discussed this later with a friend, and we decided that there are many ways we give care and respond to our LO's in a positive manner, without even thinking about it. If my husband gets up from the table and heads toward the bathroom, and forgets why he got up, I just say - bathroom or facial tissue. Because this is likely why he got up. Because we have lived together for a long time, and I know his ways, I can anticipate his needs, and he doesn't need to say anything. Outsiders would see these assists we give as a deterioration in our spouse. We don't because we are anticipating their needs. But we should listen to what other people have to say, because these outsiders are more objective than we can ever be.
Carolyn - if you search the threads there are ones that deal with the question of if and when to place. If you want to keep him home, then look into hiring in home help.
Continuing with BQD remarks re us anticipating their needs, I totally agree because we did that even before ALZ. Charlotte, thanks for the info. on threads. I'm new at this web site and new at trying to figure out what I might need. I just know I'm tired. I also know I'm Blessed. I'm so thankful for what he is still able to do and if his conversation sounds like gibberish most times, I'm still thankful to hear a sound from him. ALZ reminds me of a house that's just caught fire downstairs and the family is asleep upstairs. The smoke creeps upstairs and under the doors and every open crevice. It's so quiet but it's still creeping. We may awaken and try to put out the fire but that smoke continues to creep until it gets sucked into everyone's lungs. There may only be one totally overpowered by it but we've all been affected. I totally hate this disease.
Hi ColetteR! I'm so glad that you are here. It was great seeing you on Christmas Eve. Your daughter is beautiful & your grandchildren are so polite. I say Hi to Jim whenever I see him in the unit. Looking forward to seeing you again soon. Elaine
I just joined, I live in Peoria IL, looking to meet other ALZ spouse in my area. My husband, was diagnose with ALZ in July of 2013, it a long stroy, as to how it came on. I have him home since thansgiving. Had to have him in a ALZ center for a while, before I could, bring home, safely for my sake. I have home care 5 days a week from9 to 5, a great help, a wonderful campion for me, since all this took place, I have felt so alone. I have a wonderful son, who we live with, a daughter near by, but so busy, with job!! another son in Chicago Il. They are great, but such a shook as to how all took place. Any one near Peoria Il, or close
Welcome aboard, eva. I am also not near you. I live in the SE corner of PA 5 miles from the Delaware and Maryland line. This site has been a lifesaver for me. My DH (dear husband) is still home. He is in the final stage and has been on hospice since late Sept. Our eldest daughter lives with us and is here evenings. that helps keep my sanity.
Thamk you all, for your reply's, yes this is hard to navigate around, put will learn. I do go to ALZ support groups, trying to get others wives, interest, in forming a group, where we can gather, just, enjoy each other company, my care giver is willing to keep husband busy. But no takers, but keep in trying. So far all is going well, with hubby, no problems, just, so much has changed, he has changed, but you all understand that. Things have really changed. He is 83 years old, I am 75, married 53 years, child in a man's body, very forgetful, memory is bad. but all in all, I dare not complain. I will be back. eva
Just wanted to say hello--I'm feeling a little bereft since Joan has gone to California…and my mother just died on Jan. 15. It has hit me hard, even though she had not been mentally or physically well for a long time, and we were not particularly close. I am 64 and DH is 88. He will be 89 next month. I've left the workforce to care for him, and also have daily responsibilities for my three grandchildren, 6,4,and 3. I've been DH's Alzheimers caregiver for 13 years, and have undergone most of the negatives that all here would recognize. This website is the only thing that keeps me going, just to know I'm not totally alone. (Even though it seems like it..lonely, exhausted, etc., etc.) The family doesn't "get it", even though I moved out-of-state to be closer to them when they indicated they wanted to "help." Yeah, right----I help them a lot with the kids and do a (very) little light housekeeping for them, but they have found DH is pretty much too difficult for them to deal with. My dtr. and s-i-l both work, and on weekends or times they take off from work they of course are busy with the kids' activities or traveling. I'm not complaining, and it is a wonderful thing to live around the corner from the grandchildren and be able to be a big part of their lives. But there is no Alzheimers respite,and no social life possible with anybody my own age-- and the only people who truly understand what it is like are the folks on this website. So thank you all--you are all that saves me.
Elizabeth, I cant imagine an AD caregiver taking on 3 little ones and someone elses housekeeping. its difficult enough to care for our own spouse alone and ourselves much less everyone elses. I know our grandkids bring a lot of brightness and sunshine into our lives, but if it were me, and I have done babysitting while caring for AD. it exhausted me to no end. if you are wanting to see and watch the babies for some light in your life, PLEASE make it a condition that the adults take your spouse during the time you spend with the grandkids. its the only way not to burn out completely sooner than later. even if hes difficult, hes that way for you as well. having you sit kids, clean, and care for both of you as well, its going to be a major issue soon when you are totally exhausted. if you haven't done so try a consult with his dr to mellow him out a bit maybe a med adjustment would be key. best of luck. divvi
Hi, Divvi--Thank you, and yes, it's been an exhausting and overwhelming thirteen months. I realized pretty early on that I was being taken advantage of--big time--but there are huge plusses to being here in Ohio rather than New York, (Boardman is a nice township south of Youngstown--is anybody anywhere near?), and I think in the long run this is a great retirement location for me--and that eventually I'll get my life back. In the meantime, I'm trying to make the most of it within the limitations. I like reading, writing, and music, and I can pursue those activities at home. This is a wonderful location for walking, too, and I try to get outside every day, even if only for 20 minutes. I have set firm boundaries in terms of what I will do and won't do for my relatives, and I am definitely planning to research respite facilities or agencies who can send a live-in into the home so I can get away, if only for a long weekend. DH is not a behavioral problem particularly. The issues are that he is dependent on me for everything--cooking, cleaning, shopping, making sure he washes, dresses, gets his meds, etc., etc. --it reminds me of caring for a two or three year old child--, and there is fecal incontinence 2 or 3 times a week, plus he really messes up the bathroom in kind of a disgusting way--I won't get too detailed, lol--I wipe up the bathroom 3 or 4 times a day. He is on a walker (which he tends to forget--he likes to hold onto the furniture), and he falls occasionally, despite everyone's best efforts to prevent it. He is actually on Cymbalta for a neuropathy in his lower legs, but it is also an antidepressant--so it helps him walk better while improving his mood--a win-win. My daughter feels that since he has no memory, the attention should be on her three children and not on him--as he won't remember anyway. This attitude gives me a chill, and is why I am not going to insist on trying to exchange eldercare and childcare with her and my son-in-law. (My son-in-law is very good with him, in all fairness--but is seldom around as he is starting a new business.) So I am stuck for now, but this website is a blessing and a gift. I've not found any other resource that is as helpful or supportive, and it really does help alleviate the loneliness