Elizabeth I understand you have doubts about the exchange then. but maybe when you find inhome help (soon hopefully if you are still childcaring they can at least pay for agency for respite for a day to get out. many of us would not have made it this far without the website to share, vent, and receive valuable info and support. glad you are here, someone is usally around to offer input. best to you. divvi
Hi Divvi--thanks for touching base. I think if I can just get past the loneliness somehow, I will be able to at least move forward a little bit with my writing and music. It is funny how things work out--just in the past couple days, one of my grandchildren's preschool teachers mentioned how a local assisted living was very, very good with her mother. It isn't the fanciest one, but apparently is a warm and caring place. I will be talking with them about respite. Also, our family had totally lost contact with our English relatives. (My grandmother was from there--but a whole generation has died off since she used to take me back with her to visit when I was a child.) Anyway, one of the English cousins saw my mother's obituary online--I guess the somewhat unusual spelling of a last name was a flag--and emailed us looking to re-establish contact. So--I lost my mother, but am re-connected with the English side of our family. (All 5,000 of them--lol). It may not sound like much to others, but I am so socially isolated due to DH and his confusion,forgetfulness, stumble-bumbling, and poop , that some online socialization with a branch of the family I thought we had probably lost forever…is just so nice.
Oh elizabeth. How wonderful that you are reconnecting with your English relatives. I know how important connecting to relatives can be. I was brought up with my aunts, uncles & cousins close by & to this day I am still close to most of my cousins, even though we are miles apart (& the internet helps keep us connected too!) This journey can for sure be a lonely one. It helps to have something to look forward to (like an email from a relative!) Blessings to you.
Hi Janet, do not go to this site to often, you are from Bloomington, about a hour away. Tell me more about your self, i am trying to get a active ALZ group going here meet once a week, and do something together, have a care giver for my husband, and she is willing to entertain the husband, but no takers so far, everyone, the wives are to busy to do something for husband, to get them involed with other men at the same stage my husband is, which is the first stage. He still has some of his wit's about him. I know of a lot of ALZ here in Peoria, but, same old story, or are afraid to get involved, something!!! i keep husband as busy as I can, more so in the first stages, keep that mind and hands a going. Idle mind, devils work shop, I know with ALZ, they can not help there behavior, but, we can keep there minds active as much as possible. Eva, Peoria
eileen.s , We looked in rural Berks County 7 years ago when we wanted (he wanted) to get out of NJ. Every house we looked at seemed to be 20 miles from nowhere. So we ended up in rural Chester County, where we are only 7 miles from nowhere. I would have dug in my heels and refused to move if I had recognized the symptoms of dementia which became obvious after the move. He just could not learn a new area. He would get lost all the time. He could always read a map bur now he was telling me the wrong way to go when he was being the navigator. I soon bought a Garmin!
Eileen,I live in Lancaster co. farmland near Berks Co. border.My DH went in NH 10 mo. ago.I'm about 15 miles south of Reading. If you're in Southern part of Berks ,would like to meet you.
Eva, sorry to take so long to answer, but I haven't been reading here often. We live in a retirement community (Luther Oaks) in Bloomington. We moved into an Independent Living Apartment here three years ago. Last September, my husband moved into the memory care unit here. I would say that he's in stage 6. He doesn't really socialize any more, so we couldn't be involved in your group. When he was first diagnosed, we joined one of the Alzheimer's Association's Early Stage Memory Loss support groups. The group was for both patients and caregivers. We sometimes met in two separate groups with a leader for each group and sometimes met together for programs that were appropriate for all of us. Have you checked out the Alzheimer's Association in Peoria? I agree with you about keeping our spouses active, both mentally and physically, as long as possible.
Thank you for responding to my request, I am sorry to hear about your husband, John is 1st stage, more loss of memory a lot. He responds to me very well, Just I really am his security planket. Trying real haard to get a group started here with wives and husband, or men with stages 1 or 2, is hard to do. I have been in contact with the Peoria Alzheimer's group, will have to make it to there next meeting, next month. See if there are any new members willing to form a group. I try to keep him as busy as I can, he goes to Senior World, 2 x a week, does not say much, but I think he likes it. At least it give me time for my self, i though of going into a retirement coummunity, with him, but can't get myself to do it. Is very expensive. I have a person come in 5 days a week, 9 to 5, she helps me keep him busy, and a campion for me. That is working out well, just would like to get, more ALZ wives interested in this, better for all of us. Thank you Jane
I am from Washington DC. My father is suffering from Alzheimers. He was in first stage. He is on the way of recovery. Just came across this forum so thought of joining.
Hello!! We are from a tourist town, north of Toronto, Ontario. My wife is in LTC. The guilt and loneliness is now my main problems. Glad to have found this site.
Welcome, Moses. You will be so glad you have found this site! So much support and caring from our members! My DH passed away 11-24-13, after 11 years of caregiving - all but the last 11 days at home. It's a hard road we have to travel, but we are all in it togther.
welcome Moses. there are many Canadians here to offer support as well as many from usa and generally from all over the world. sorry you are sharing the grief and lonliness of placement. there are a lot of threads dealing with this very subject from others who share your feelings. divvi
Welcome.Moses.You will find much support and answers here on this site.I placed my DH in LTC a year ago. Yes, I feel the loneliness ,but I do not feel guilty. I did what had to be done in his best interest. PLEASE don't feel guilty,don't let it eat away at you.
Hi Chris, My husband was diagnosed seven years ago at age 78 but I did not find this website until this year. I wish I had known about it earlier, since it has been a huge help to me. The other members have been so understanding and so generous with sharing their experience. I hope you will find this site as helpful as I have found it to be.
welcome juliedewa. I think you might be the first from Fiji. One sure thing, this disease does not discriminate no matter where you leave. Sorry you had to join us but glad you found us.
Hi Chris; My husband has early onset AD too. He's 62 now. Was diagnosed 2009. Early onset spouses face particular challenges because the disease interrupts the family income, during what usually are the most productive years. Early onset makes it's appearance usually before the mortgage is paid off and before the children have completed college. I've kept my hubby at home as long as possible because he's so much younger than the others in the memory wings. Sadly, keeping him home has now made Medicaid LTC more difficult, because of changes in the last 2 yrs. Almost forgot to mention that I'm in North Carolina
I live in Vallejo, CA which is approx 30 miles from San Francisco. My husband was diagnosed approx 10 years ago. I just moved him to a memory care facility two weeks ago. He hasn't accepted it yet, but is not angry - more depressed and confused.
Welcome Darleen, I am from southeastern PA, 5 miles from the DE and MD border. Its a good place to live as we have lower Real Estate taxes and can shop in DE where there is no state sales tax. I think I diagnosed my DH (dear husband) in 2007 when we first moved here from NJ. He couldn't learn his was around the new surroundings. By 2009 he was nasty and aggressive and a doctor wrote Dementia an his chart. It just got worse through 2013 with calls to the police and hospital stays, and trying all sorts of anti-psychotic drugs until we settled on Celexa and Abilify. Late 2013 he went on hospice and was bedridden by mid-October. He was home all the time except for 3 respite stays. He died this past July.
MaryinPA. So sorry for your loss, but honestly, the real loss was back in 2007. At least that is how I feel about Bill. Bill entered the aggressive and violent stage a couple of years ago. I woke one night with his hands around my throat choking me. Another time he was screaming at me (incoherently) and actually pulled a swinging cafe door off of its hinges and threw it across the room towards me. The doctor put him on risperidol and later trazadone. He is very calm now, but not zombie-like. Bill is 20 years my senior and I always knew I would most likely be a 'youngish' widow... but never in my wildest imagination did I think this would happen. Dementia is a bitch. I miss him so much.
Darlene Wright, I used to live in Vallejo, CA. My husband was Civil Service at Travis AFB. If I was still there, I'd treat you to lunch, but I'm on the other side of the country now - well actually for 41 years now!
If you have to deal with this disease, this is the place to come. Welcome somehow doesn't sound right, but - welcome!
By the way, anybody out there anywhere even remotely close to me? I live in Boardman, Ohio (a nice suburb of Youngstown). We're just about halfway between Cleveland & Pittsburgh.
Barbara live in Nj right near We Memorial Bridge but spend most time in Due. My DH was diagnosed this summer though, I've been aware 3 or 4 years. Wrote on Welcome sight but, couldn't find my own posts. Angry right now that drs wouldn't listen to me and he could have been on meds earlier. Of course he fights taking thgem
Understand Barbara that the AD drugs, if they work, only allow them to stay cognitively functioning longer while the disease rages on. It does not stop or slow it.
Thanks charlotte. I realize that but, he does seem to be a bit better with meds. Dr is so reluctant to give him anything. Wants him to see neuropsychiatrist but, hubby refuses to go I've made appointments. A couple weeks ago he burst in onmy physical therapy session, yelling he wwouldn't go. He's much easier to deal with when I don't mention DR's . very loving most of the time. I know I am very lucky in this because he has at tyimesx shown the dark side, as I suffer from PTSD...I really can't handled that. I know I'm rambling, thanks everyone for listening
Oh my goodness! I just was reading this thread, and see that Mim lives in Boardman! So do I! Does anybody know the etiquette for getting in touch? How do we do that?
elizabeth, I hope you check this thread. (I did not want to hijack Jazzy's thread about the deaths of her brother and sister-in-law.)
I can't believe that you are familiar with the small village of Millerton, NY! I live in Mass., more than two hours away from Millerton, but I've been there many times. All of my paternal ancestors who lived in this country (except my grandparents) are buried in St. Patrick's cemetery, in Millerton. They lived in Lakeville, Conn., where they mined iron ore in the 1800s. St. Patrick's in Millerton was the closet Catholic church. I did not know about Harney teas but I will certainly try some now!
BTW, Were you ever able to get in touch with Mim? I see that she lives in the same town as you do.
Does anyone out there live in the vicinity of ocean city, md or fenwick island, de? I am new to this website and have been caring for my husband for 9+ years. I need to find a new support group. Have been very disappointed with the management of the support group that I have been attending.
Hi all...I just joined the group. My husband has FTD, diagnosed in 1992. He also has PTSD, is retired Army, 3 tours in Vietnam as a special Forces medic. He retired from the Army in 1978. We married in 1982. We live in Pine Mountain, GA.
He is a puzzle that I have yet to solve. Was told that he has FTD in 1992. Prior to that time the VA called it PTSD and in 2003 granted him a 100% disability rating based on the PTSD diagnosis. He has characteristics of both and I guess he could have both. The thing that puzzles me is that the FTD has not progressed very much in all this time. I have read recently that veterans with PTSD are much more likely to develop dementia than are those veterans who do not have ptsd. His FTD seems to be the behavior variant....problems with judgement, reasoning, executive functioning and impulse control. He received the FTD diagnosis at UAB in Birmingham (2.5 hours away) but has been followed since that time by his neuropsychiatrist in the next town over. I asked on his last visit about sending him back for another evaluation but the dr said that given his age (75) it would be a waste of time and money.
Yes I have been taking care of him all this time. He can still handle all the ADLs. My biggest challenge is keeping him out of places where he can pick up things he shouldn't and put them in his pocket. He was caught and arrested once. I know that was not an isolated incident because I have found items that I know he didn't pay for....long story. Needless to say this has all taken a toll on me....I am always waiting for the other shoe to drop.