I can't seem to help myself. I feel alone and lost. What should I do?

You can ask MD to order homehealth care and ask for RN and AIde to help with hygeine

I am in the same situation as so many of you. My husband, 71, has been diagnosed with Lewy Body Dementia and our retirement is nothing I imagined it would be. My husband has so much anxiety about everything....money, things he sees on tv...he asks me questions all day which make no sense what so ever. We are trying different meds with not much success so far. He needs help with everything including bathroom, grooming, etc. We were supposed to be traveling, playing bridge, entertaining. I really don't have any help....He does not like the day care facility (he doesn't like anywhere I am not). I am going to try another facility next week. I am so depressed I am taking anti-depressants (Wellbutrin) which is not supposed to not make you tired but it makes me so lethargic I don't have the energy to do anything.

I got a facelift a few years ago so I could clean up poop.

I meant to say I got a facelift so I could stay home and clean up poop!

made me smile the 1 st time you said it, I just bought some great jewelry, to wear while I sit home every day answering question after question.

I get to get the newspaper from the box each morning, mail each afternoon, trash twice week. recycle once a week and then I get to bring the cans back up, plus sometimes I even get to put outgoing mail in the box! I get to wear my jewelry to his doctor & dentist & lab work visits, plus an occasional trip to the barber. I could go on and on about what I get to do, but I guess you probably already know.

Hi All, Thank you for your posts. It is interesting to hear that you and I have found that we are not living the lives we imagined. I was working so hard, I didn't really imagine anything for right now.

Recently I decided that I am going to try to get up each morning and say "I'm lucky" to have the challenges and blessings in my life. That I know life is a puzzle and even the challenges are here for me to solve them and I'm trying to enjoy the challenges as well as the good times.

As I am reading your messages I smile with familiarity. What motivates us to get up, get dressed and get going? I left a corporate job, where I wore nice suits and jewelry and had my hair done, to care for my mom. She always got dressed up for her doctors and any tall man no matter who might come around. She wore lovely pastel sweaters and then toward the end I noticed she would wear stained slacks. In retrospect, that's when I knew something was really wrong.

For me these days, now that Mom's gone and so is my job, I struggle to find a reason to get dressed nicely. I love wearing jeans and no earrings and I still put on a bit of eye makeup. Also, I pay to have my hair colored. Why? Where am I going that anyone cares?

Well, my kids care (they are grown young men now, living far from home). They probably care the way I cared that my Mom put on those pastel sweaters and clean slacks.

The other day a dear young friend of mine, who I am blessed to know, invited me to see a show with her. She showed up in a raspberry sherbet colored coat, with over the knee boots and grey and black checked leggings. She is tall and slender and lovely inside and out. She had just had her hair cut and blown out that day. A few weeks earlier she told me I should wear my Mom's beautiful scarfs, so that day I put one on and my friend complimented the scarf a million times. I felt like her mother, and that was OK. I said yes to the invitation, and had a chance to get out of the house. We took a bus to the show and on the way home we had to stand the whole way. It was great. My step tracker told me I walked 6,000 steps that day!! I think it was the potholes.

It's an odd time of life. It's a potentially wonderful time. While I'm sad because I miss my Dad and Mom and I'm not sure who I am because I left my job, I could also say... I'm happy because I'm free to reach out to others, to walk in the sunshine, to join a friend at a show. I'm trying to look on the bright side, every day. Trying to find my way in this strange new time of life and it's OK. I hope over the rest of my years that I can find a reason to wear my jewelry and maybe some day I can have the wrinkles removed with a face lift. Most importantly, hopefully I will find laughter and friendship and ways to help others. Maybe someday I will find a raspberry sherbet colored coat to wear in the spring.

Today I'm going to try to smile and greet every passer by. I'm going to try to compliment everyone I can (in the grocery story and the post office), I will send a note to each of my sons and I hope I will make their day a little brighter.

I'm planning to think about and dwell on the positive things in my life and I will say to myself, "I'm lucky".

soozi, I hope your job is in writing because you are an excellent one.

I think the thing I miss the most is someone there that I can talk to, comment about something on the news, something funny that happened, how sad I feel, I gained 2 lbs, etc etc. I am with him but feel so isolated.

I miss the daily conversations also. Just little stuff, the things my Mother and I would chat about. Now it is all about explaining, repeating, directing, re-directing. She is so boring to be with - I feel guilty even saying that - but it is true. It is hard to be with someone who is in such a small world of their own and want you there with them. I do not want to be part of that world. Just venting - have no answers today.

Yes Photoartc. I just want to have someone to talk to. I say something and he smiles and nods, but he doesn't have a clue about the content of what I have said. He goes everywhere with me. He doesn't want to be left alone. Yesterday he sat while I picked out new lights for the bathroom. The lady in the store couldn't stop talking. I enjoyed it but could see he was getting fidgety. But he never complains. That is something to his credit. I will say that. He has to watch Fox News all day long or a movie (DVD) I have seen a million times. He will say something if I change the station! Most of the time I watch something else in my bedroom. But I see him standing in the hallway several times just to make sure I am still there. He even watches when I go into the bathroom! I do like some privacy.

Wammanealz: It is so weird to read to read your post; it is like a parallel world because you are talking about my exact life and my husband. I say again, what a horrible horrible disease this is. I would take ANY other illness over this for him and me.

Now, this is going to sound terrible but it is something I have thought about a lot, and I imagine some have also thought about this My husband is very young (71), was a triathlete and did the Ironman 3 times after the age of 50. His father is 95 and just now slowing down. My husband is in excellent health with strong bones (we know this because he has fallen on his hip very hard 2 times with no broken bones). He is not happy and cries sometimes because of his condition and the fact he can not remember the names of his friends and grandchildren. How long are we going to go through this? One year, five years, ten years. I worry that something will happen to me (more likely) and he will be left alone. I tell my husband we will worry about one day at a time and I try not to dwell on it myself, but it is always there...gnawing at me.

I sometimes think it would be nice if I could find someone in my same situation in my area and we could get together with our husbands. We could talk or play cards, have a glass of wine and our husbands could communicate in their own special way. Maybe we could watch each others husband while one took a walk or went to the store. Wouldn't that be loverly. Does anyone live in the Newhall/Santa clarita area lol?

wish I was closer, because your idea is a real winner, but I am north of Baltimore, Md. BUT what if we as a group, went on a Caribbean Cruise?

And photo, your idea does not sound terrible, I wonder also how long will this last, will I be able to handle the bad days of dementia, but each day I get myself up, dust myself off.........you know the rest, and start all over again! About me going first, I am scared to death about that, no one will take care of my husband except the NH his daughter would have him in within 30 minutes, so have to take care of me too! I do not like the recent findings of how many female caretakers end up with Alzheimer's, that cannot happen to any of us on this thread!

The body can live a lot longer than the mind - especially if they lived a healthy life style. Tragic but true - caregivers frequently pass away first - and I know why-because we want to. That was a sick joke. I think the only sane way to handle this is one day at a time. Too much worry about the future will just make you sick and not help the present situation. Joy in the little things - that is what I do.

twopupsmom, I would love to go on a cruise but that is pretty hard with Mr Man at this point

Photoarc, where do you live? I am in Southern MD?

Bummer, I am in So California

Wanna meet for coffee Photoartc? hahaha. I have more chance with two pups mom. The Carribean trip sounds wonderful. We can dream, can't we? My daughter lives in BelAir, MD. Close to you? I am coming up there in a week or so to see my daughters. Guess I will drag Bill along. Its easier to take the three dogs than him! But one daughter is coming down from near NYC to visit for the weekend. It will be so nice to see them. Maybe they will see what I am going through with their stepdad. We rarely see his real daughters. It's been three years since they came for a visit. They are lucky they are in NJ, or I would be dropping him off with them! We moved here because of high taxes in NJ. This is our retirement home. It was built in 2000. I just had to do extensive repairs because of shoddy construction. I can't believe home would go bad this fast!

hi Wanna, I'm the one who also lives in MD, about 1/2 hr south of Bel Air. I know what you mean about traveling with Bill, I need a Xanax just to get my husband moving & out to the car. So many questions, just like trash night here, I'd rather pull my hair out then go through exactly where the trash can or bags go (at the curb) I know it's much easier just to do it myself but I have to keep some sort of routine to keep him feeling needed. My children are a blessing with their step-dad, although they live across the country. Local daughter, not worth the effort to talk about her, the original ME person. Shame about your home needing major repairs so soon, I just went through a bunch of $$$ because the builder of our home had the brick people water down the mortar so it's starting to come out, caused inside leaks etc, had to have it all re pointed and waterproofed - either that or bricks falling on us, and our home is 19 yrs old. Have a good time on your visit, it's so good to have someone to talk to....other then the limited conversation at home & with my dogs! Forget about the Jersey group, if they have not stepped up to help by now, it's also not worth the effort

Oh no ! Wait till Captain reads about what the brick people did!

twopups mom, I have the same thing with trash. We have regular trash and recycled trash. So I give him the stuff to take out and he invariably throws trash in the recycled cans. So last time they dumped it back in my driveway! So nice of them. I have already talked to them and told them about Bill. They understand but I guess they just got disgusted and threw it back!!! Now I stand at the door to the garage and watch where he puts it. Yes easier to do myself for sure, but like you said it is good for him to have something to do. He still can run the vacuum cleaner for me. About a year ago I asked him to empty the litter box for me. That ended up with Cat Pee all the way down the hall and out the door. I had to throw all the scatter rugs away. And there were several. It never ends.
Can't believe how unscrupulous builders are. The men who are helping do repairs said it is because the builder built these houses so fast! True, He built this house in 3 months. Now I am finding out how crappy it was built. He didn't use adequate plywood for the flooring, etc. The crawlspace just had to be waterproofed. That was really expensive, and now the bathrooms both need repair. Oh well at least I can enjoy the new repairs myself! Did anybody ever have to put in a wheelchair accessible shower? I am thinking about that as I plan these new bathrooms.

dear fellow alone. i feel as you.i am now 73 years old, (i never saw old age coming) all my life i have been a go getter, worked hard. raised 3 chrildren and life.i do know exactly how you feel.when my husband passed away 7 years ago it happened very quickly with no warning. i had also just lost my youngest son in the navy, he had come very late in life and was a loving child, doted on by his sister and brother, so of course he was a very happy, lovingperson. it all seemed to come crashing down at once. but daughter and her family had moved to showlow, az. and sent me the paper so i could send resumes to az. i wanted to be near her, but the job i had of sixteen years, i wanted to make sure i was employed if we moved to her.well. after all this i fell apart, could not eat. sleep or work. lost, lost lost.my son called my daughter and they came and got me, bringing me into their home. i literally walked out the door taking nothing and came to their home.since then i live in a back room they allowed me to be built on the back of their home.as til it was completed i slept for a year in a recliner chair. they had no other bedrooms.yes its true you can go to church and being here i really have no friends. alone ////most of the day and even when they get home. their tired.its very hard to meet a true frend and share. i find all my strength in the lord. but on this earth i need a friend to share with you your
needs, thoughts and all/ perhaps together we can come up with some positive things.i would like to know how things are going daily for you. what can we offer and share to make life a little bit brighter. sometimes just saying it to another person lifts a load. thanks for hearing a portion of mine, please let me hear from you. its beautiful here with pine trees, like living in a forest haha. be well
your friend polly lange.

Hi Polly,
I am Nancy. I feel so bad about your situation. You must be in the mountains of Arizona to see all those trees. I have visited my in-laws there once in Phoenix. It was beautiful and then the ride north to the mountains was spectacular. We went from 75 degrees in Phoenix to 4 degrees in Flagstaff! It was at Christmas time. That was at least 40 years ago. I am 69 and I wonder if there will be anything left of me when this is over. At the same time as alone as I feel with Bill here, I know it will be more alone without his presence. He still looks healthy at age 78! But I have seen a huge decline in the last ten years. Hate to say it, but I guess I will be the same. Still I have to be strong to take care of him. So I will do what I have to to do that. Yes the Lord does help us a lot. It took me a long time to make friends in church too. I am in a Bible Study group and have been for three years. They are great but never call me during the week. That is when I get so lonely. It is good that you are there with your daughter. I know they are tired when they get home. Do you cook for them or do they do their own cooking? I had my Dad living with me when I was still working and my daughter was in the house too for a while. She was going to college and in law school. I think she took a year off to work and that is when they were both there. That situation worked out well for us. Dad was great and we became best friends during those 5 years he was there. I was so glad that he did come to live with us. I hope you are doing OK. Maybe you should try to reach out at your church and ask someone to go to lunch with you or shopping. That is always fun. Maybe you could meet a friend that way. I sew and have been taking some sewing classes to get back in the swing of things. I have met a few people that way too. Let's keep in touch!

gosh, it was great hearing from you. during the week when things are lonely i am always here for you. i did not mention that it was a struggle for me to not have my own home and used to independance. i struggled with that. i was a manager in the hollywwood hills ca., even had "drew carey" as a tenant for 6 years b/4 he got money.
after i got my self together a little i took a job at walmart as a checker cashier. well
i was meeting people. great, then,,, i fell downstairs backwards and damaged the 4 lower disks. so sitting very long, walking much is truly a challenge. i was 5 ft tall and now am 4 ft 10 inches. haha. i have always had a shoe fetish and since i was 15 yrs old have worn high heels. i have a huge bagful in my closet that i can only look at. "golden years" ok......are you in wisconsin? i was born in michigan,and yes
we are in the mountainous area,i find it beautiful. i never did like los angeles.nancy
what is wrong with bill? how is your health? it is difficult to not have someone to talk with and just let out your feelings.i would like to know more of you and bill.
and yes i sew too. i just ordered and received some pillowcases to embroider for my daughter and hubby. hope i remember all the stitches.for church, i watch joyce meyers pastor. do you get her where you live. it's helped me alot.
si i will close and say lets keep talking whenever you feel like it.
your friend/ polly

THANKS Pam S. Yes, my insurance paid a large chunk of my flooded basement. I found during the basement repair that I had leaks in both bathrooms and they need repair. Then the other day my toilets backed up. I had to have them snaked and it was quite a job for the plumber. He snaked the exhausts on the roof. After about 4 hours, he discovered that I have a belly in my sewer line just outside the house which needs to be dug up and reset so the pipe drains in the right direction. He also told me that my roof needed new rubber gaskets around both exhaust pipes! By the time I heard all of this I was having a real melt down and just unable to cope. I posted on Facebook how upset I was and within an hour or two, I had friends from church come to the house. The man is a shop teacher at the Tech school. He fixed my rubber gaskets on the roof and told me he will have teenagers from the church dig out the sewer pipe and he will reset it for me. What a life saver. He really brought some confidence back to me. Bill just sits there and smiles, totally unaware of the problems. He is the lucky one. No worries for him. He seems to be happy all the time. I just wish he would stop trying to help me. Every time he does I have a mess to clean up after him. Why though, is everything happening at once? Our house is only 14 years old. Funny, last year we didn't have a cent for repairs. This year, since Bill's brother passed and left his money to us, I will probably have just about enough to get everything done. He is the one we had here for a year and then he was in the nursing home after a heart attack, and too weak to take care of himself. He wanted to go there, so at least I didn't have to feel guilty about that! I am thinking that God is taking care of everything. I just need to Trust HIM.

THANKS Pam S. Yes, my insurance paid a large chunk of my flooded basement. I found during the basement repair that I had leaks in both bathrooms and they need repair. Then the other day my toilets backed up. I had to have them snaked and it was quite a job for the plumber. He snaked the exhausts on the roof. After about 4 hours, he discovered that I have a belly in my sewer line just outside the house which needs to be dug up and reset so the pipe drains in the right direction. He also told me that my roof needed new rubber gaskets around both exhaust pipes! By the time I heard all of this I was having a real melt down and just unable to cope. I posted on Facebook how upset I was and within an hour or two, I had friends from church come to the house. The man is a shop teacher at the Tech school. He fixed my rubber gaskets on the roof and told me he will have teenagers from the church dig out the sewer pipe and he will reset it for me. What a life saver. He really brought some confidence back to me. Bill just sits there and smiles, totally unaware of the problems. He is the lucky one. No worries for him. He seems to be happy all the time. I just wish he would stop trying to help me. Every time he does I have a mess to clean up after him. Why though, is everything happening at once? Our house is only 14 years old. Funny, last year we didn't have a cent for repairs. This year, since Bill's brother passed and left his money to us, I will probably have just about enough to get everything done. He is the one we had here for a year and then he was in the nursing home after a heart attack, and too weak to take care of himself. He wanted to go there, so at least I didn't have to feel guilty about that! I am thinking that God is taking care of everything. I just need to Trust HIM.

Hi again Wam last week my husband put something in the 1/2 bath toilet, no sense asking what, but I expect he used paper towels instead of toilet paper, 4 hours later of following 6 ways to unclog a toilet, on step 5 ( right before call a plumber) it finally opened. My arm was so sore from pushing that darn plunger for hours, couldn't even lift it. Hubby really could not remember about plunger operation if it does not clear on the first try, he just kept asking, what's in there making that happen every 10 minutes, me him & two dogs in this tiny bathroom the entire time.

I am so happy you found help just by a simple post on FB there are true angels in this world, as for me I hate asking someone else for help, and I have good neighbors. Beside all your house problems what have you & Bill been doing? Anything exciting :-)

Two pups mom, my excitement has been all this trouble deciding which to do first and what needs to be done in order to live in the house. Not only were my toilets backed up. The raw sewage had backed up into the tub in one room and the shower in the larger bathroom. I thought it was something he did too, until the man pointed out that the sewer pipe needs to be dug up. That costs about $5000 so I was really upset about it. And the man from our church that is going to fix it, is an answered prayer. For excitement I find bluegrass shows for Bill and we go to listen to the country music. I never thought I would like that, but I took him anyway because he likes country music. Well it ended up that I really enjoyed it too. Its very loud but I couldn't stop my feet from tapping to the music. So it is pretty inexpensive, and while we are out nobody knows that Bill has Alzheimer's and I can forget for a while that anything is wrong. He can still go into the bathroom by himself so I guess that will be the next thing and then I am really going to be stuck at home. He normally watches DVD's all day long. I get sick of the same movies so I go in another room and watch TV. He comes and gets me to change the DVD or to turn it back to TV. I know when he is standing there watching me that is what he wants me to do. And we do go to Mass for him and my church for me. It is the most relaxing part of the week for me. For two hours I don't have to do anything. Mass is rote for him and at my service he just sits there. I enjoy the peace and calmness of both services. Then we come home and back to our normal routine. Like I said Bill seems happy most of the time so I am lucky that way. Now if everything in my house would just stop breaking! As soon as the wether gets nicer, we will go for walks and I am hoping maybe some picnics at the water's edge. We live near the Chesapeake bay so we can have a water view whenever we want to feel good! I guess I am not as miserable as I sounded in that last post!

I have vented here many times and sounded so miserable - which I was at that moment - only to become grateful for the small things once again. Everything passes, even our lives and our loved ones , it is good to appreciate the little things that give us pleasure everyday.

Ah yes you are close, we would go to Solomon's island for picnics (USN R&R) or just look out from Sandgates while there for steamed Maryland crabs, does do wonders for the soul. Hope all the bad "house" problems are taken care of soon. I have learned to just go with the flow with Norman, he's pretty good , like you describe Bill, but occasionally inquires about how he's going to get back to Pax River, he's much easier to re- direct nowadays. Bath room is also still good, and hope that doesn't change, only time will tell!