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

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

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.

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

ba8alou, He won't be eligible for Medicare until June. You don't get Medicare until you're 65. He gets it at 63 cause he's been on SS disability for 2 yrs. I don't believe Medicare helps w/hygene until the person is on hospice. I doubt that paid help would have any luck with him either at this point.

Thank you for all the answers I have received and I see that many, many others are in the same boat as me. My husband it 79 and I am 69. I haven't really tried any social groups because He has really just gotten bad enough to need me home every minute!.. Before this I used to go out with my girlfriends for lunch. Now we take him along. That won't last long. The phases he is going through are getting quicker and quicker. I don't' expect this phase to last long. Soon he will be incontinent and then I will not be taking him places! That will be too hard. My favorite place to take him is his church. It is so pleasant for him that I can relax and let the church routine take over for him. It is kind of automatic for him. I expect that to last the longest since the routine has been instilled a long time for him!

stafford; can you get some Medicare based assistance, if you husband's doctor prescribes such? Very often, elders will cooperate with "someone else" who comes in to bathe them on "doctor's orders" in a way that they won't with their spouses or children. Just a thought.

I saw the other mans answer of wanted in 2 states and unwanted in 48. Sounds like me in this small Vancouver Washington town. During these times of loneliness, I've met the invisible friend and big brother Jesus. I went to the neurologist the other day for symptoms related to disease and or disorders of the brain, and she prescribed malox. So I sit here bewildered as to what to do next before the symptoms continue to get worse.

It's amazing how many of us are on here - so lonely - no one around us wants to hear our whining. How great it would be to talk with each other face to face. Hubby has FTD, 62 yrs old and at least 5 yrs into the disease. I miss my freedom - can't even do yard work w/o him following & staring. Hygene is terrible, so don't want to take him out. Dr. appts. require at least two days of fighting to get him cleaned up. I hate this disease and I hate my life.

BarbKirby I know what you are saying. My children and his children are so far away and I am the only one left in my family! Lets keep in touch on this site. It does feel so lonely and you only see the situation going downhill instead of any happy ending. I am not going to have him treated for any other disease unless it is painful or disturbing for him. What is the point of prolonging this agony for me and nothingness for him? Of course I would not let him be in any pain or agitated state. We have our home and our pets which make both of us happy at this point. He still knows me, thank God and he never tries to go out alone. I think at this point he realizes that he can't take care of himself and still needs me! He is very reluctant to be separated from me. He practically follows me around the house as I do chores. How about your husband Barb? How long has he had it and how bad is he? My husband has had it for 9 years that I know of. I left him alone while I went to work until 3 years ago. Then I discovered that he really needed me! So I have been home with him for the last three years. Well get through this Barb if we have each other!

I feel your pain!! I'm in a similar situation. My husband has early Alzheimer's Disease, and I am his only caretaker. His niece lives some distance away and is no real help. We're in CA where I have no family or friends. I called on the ALZ association in a nearby town but only received some reading material. Sometimes I feel pretty desperate, but try to stay focused. My husband wants to sleep most of the time and only becomes active when we have a doctor appt. I did get us into a research study which is helpful, but he isn't happy with it. I'd really like more contact with others in this situation.

Yelp is free, unlike Angie's List, and an excellent resource for finding household help, plumbers, electricians, in addition to their original restaurants, etc. People submit reviews of their experience and they add up quickly with the quality places you can trust.

I have started taking dad to a senior recreation center in our town each Thursday at 12:30. They have a live swing band that plays the right era of music & they have a female singer as well. It is a free event. There are alot of dancers. There are line dances, polkas, all types. Thankfully no country. Today they sang Almost Like Being in Love. Hadn't heard that song in ages. They draw about 100-200 seniors from 50-90 years old. People chat with each other & the ladies will get out and dance with each other as well if there aren't enough men to go around.

Just a clarification on MeetUps... I only mentioned divorce as an example of the vast array of choices.

Pick your own interests, (reading, dancing, walking, cooking, meditation... ) what ever interests you and look for a group that meets around your interest. I went to a meet up with only two other people and it was delightful!

Please do not use my reference to the types of MeetUps to discourage you from determining what your OWN interests are and looking around at the list of Meetups in your area. Sometimes looking at the list gives me ideas of what I might like, things that I never considered before.

Good luck with it...

Well, first of all, Bill has had this for 9 years now. I have only been home with him for the last three as he has deteriorated and needs me full time now. Before that he stayed home alone and welcomed me home from teaching every day! I have been handling everything for the last 8 years plus my job. But I guess I really miss the first graders and the daily contact with people who talk! We had a new member in my small group at church on Tuesday morning. Maybe that is why I couldn't open up in front of the group. I usually can spill my guts and ask for prayers, but I was exceptionally upset by an bad encounter with a large company who pressured me to accept their contract to fix my crawlspace. The President of the company really apologized to me when he found out I was caring for my husband with Alzheimer's. Turns out he lost his wife to ALZ. He did return my check and I canceled with that company. It is just that things are piling up. A couple of years ago my church volunteered to help widows get household chores done. So thought I am like a widow. I have no help from my hubby, only messes to clean up after. So I accepted their help. Well for two years I asked and no one showed up. Then my neighbor, who I knew and respected very well came over to help! He walked through my house with me and wrote down every thing that hadn't been fixed for two years. I knew he would do a good job! Two weeks later he woke up paralyzed from the waist down. He ended up in a huge hospital in DC and it turned out he had a tumor growing on his spine. Two months lated he is dead and now his wife is a widow too. Losing him was just devastating.. He was such a good Christian man who always looked for ways to help people. He hadn't even retired yet from full time work, being in his early 60's. And his poor wife…..I just can't imagine the shock she is going through. I haven't asked my church since then because I just don't think it is going to happen. That is why I am just going to hire a company to fix everything. Things are going from bad to worse and I am afraid of having to tear out my entire bathroom if I don't get a leaky tile job fixed. Things like that escalate if you don't' get them fixed. I refuse to live in a run down home that has never been taken care of. So its that and wondering how I will care for Bill when he gets even worse. These are the things that are praying on my mind! I really appreciate all the ideas that have been presented. I will call that number in Waldorf, MD and see what they can offer. I also will contact my Senior Center and see what they have to offer. I do take Bill to hear bluegrass music, which he loves. I can still take him to the minor league ballgames in the summer. He loves that too. I have three dogs and they are my bet friends, really. I can talk them, get a sympathetic ear and lots of unconditional love which I desperately need. And I am a sewer and a quilter and have lots of that to keep me busy. But I do just need a friend who I see frequently and can just be there for me. Guess that is all I have to say about that. Thanks for all the suggestions and ideas. They are greatly appreciated and you all do make me feel not so alone.

Time for you to start doing for yourself because your one time "protector" is no longer going to protect. The reality is he will die and you will have to fend for yourself regardless of who is left around you. Start making new friends, start getting close to your daughters and when friends become toxic to your relationship, time to say goodbye and find new friends who will be supportive. Everyone in this life comes into it alone. It is up to you to make friends, get the help you need and it doesn't have to cost money (you can find help at the library, your bank, and your church is also a free resource). All you need to do is ask for help. Do not let your pride or discouragement deter you. Fight for yourself because no one else is going to until you make an effort.

Are you able to express to this church group you belong with about the difficulties you're up against. If you are worried about imposing upon them, maybe try a prayer line number or another local church, and ask how you might be able to express yourselfs to your church group. I'm sure they would love to help you if only you would express your difficulties and concerns. Discuss the transitions your experiencing. When one hurts, we all hurt.
G-D bless you sister...the invisible Jesus always around to talk too.

They may be afraid two different doctors give two different reports. This can disrupt the reimbursement, so you should always have a "transmittal" which is a brief update from the NH to the doctor, which the MD fills in and you take back to the NH. You keep a copy for your own records, so you will always be carrying an up to date medical history. It also includes any orders from the outside MD, and they cannot ignore a written order.

I would like to know why. I would especially like to know why they would be so concerned about him getting a good checkup out at the doc that knows him.

Both the fact that I am kept from speaking to the doctor & his asst. & the fact that I am (like usual) chastised for wanting to be present at a thorough medical exam out at the doctor that knows him & his history does not lead me to think good things about the medical plan of care at the building. Even when the MD did finally call me back he wanted to know exactly what my concerns were & I said my only concern is that if I were caring for him at home I would be choosing the doctor, taking him there, since he has mod-severe alzheimer's I would be participating in the exam & appt. giving updated info & keeping track of doctor's notes in my head. None of this is ever possible in a NH, any NH. So the doctor will only be communicating with a hall nurse, a DON, maybe or getting records from them if they are taken up with other work at the time he is there. & all of this is 2 weeks old since most of the reason a medicaid patient is dumped is that they are in a duly-certified bed & the place just got a call from the hosp. on a patient that needs a medicare bed which will pay the facility way more & dad is on his way to the ER. Then they will not take him back since the bed is now taken by the medicare guy. So every new NH there is a new nurse, a new MD & the only history is from the facility last. Not from 3 years. I think that it would be helpful to the facility, the MD or asst. to have the 3 or 10 year old history that only the POA has. But no, no one wants that. I don't know why.

Pstegman, My MIL is in an ALF & has been for years. My exp. is only with NHs as there was no money left for an ALF. In my area NH medicaid only pays for NHs. I have heard good things about some ALFs but I will say my MIL did have to move to a new ALF about a month ago after several hospitalizations & rehab times. She is now on hospice in her new ALF & as for many I see no over-medication or keeping her in bed as sometimes happens on hospice. My experience with hospice was horrible with mom & over-medicating. NHs are a whole different ballgame than NHs I will admit that however if there is no money & no LTCP or if the patient is too advanced to go in an ALF then they will end up in a NH & I would never suggest one to anyone that can still care for them at home as it is 1 on 1 & the caregiver is lovng the patient. I especially prefer the MD visits in an office environment. The MDs at the NHs are also horrible & do not spend any time with the patients. Mostly they are seen by assistants which is fine but unless your patient is emergent you can't see the doctor or asst for a month since you are in a NH. Although all the NHs I have experienced hate me for this more than anything else I do as a caregiver I almost always take dad out to the old family physician I used to have for them when at home & get a thorough checkup. Of course it doesn't help much because the NH doesn't have to recognize or follow their orders since they aren't on contract. And one other note, they always, always try to threaten that billing for their MD & mine might get sticky. Like that is going to stop me. I even contacted Medicare & Blue Cross once to see if that threat was legit & they said no the only time they heard it was an issue was if both docs saw them same day & even then both usually paid out. But each facility always tries to threaten this like it is some huge crime for the man to go get a thorough eval. Now what could possibly be a patient-centered, positive reason for this continued threat at each NH?

I can't think of one. If his visit didn't get paid for then I would be the only one responsible for the bill, not them. But every NH has threatened the same threat since this all began. Now there was one NH that I fell in love with the NP that came for an MD. So much so that when I had to move dad once I moved him to where she would have him like she had had my mom. But we only had her the first time because we were about to be evicted by the assigned doctor in the beginning or his NP or PA. I requested a change of doctors & got this one who even gave me her cell phone number since the facility started blocking my messages to her. That was a good facility too. This facility we were randomly assigned a doctor & for 2 weeks I left messages with every employee in the building to get him or his NP to call me so I could introduce myself over the phone or in person & for 2 weeks no calls. So after a day at an outside doctor's office & being chastised for such I requested a change of doctors in the building. I finally got a call from the doctor. Only because he was threatened with being replaced. I still haven't met him or his assist. I probably will forever be blocked from ever meeting him since that is protocol here. I am his only child & POA. I don't like it. I have also seen these exams. It is 5 mins at the most once a month with each patient. The doctor in the office took 30-45 mins. There were also labs drawn. She also knows him for 3 years now. The new MD has not seen him because it hasn't been a month. He will only have very short history on him since he just moved to this building a couple weeks ago. Each general md he has had he has had at the most 3-4 months so he would have only seen each maybe 3 times since it is once a month. All of this happens because I originally put him in a home & because he has medicaid. Had I kept him at home he would have had the same doctor all 3 years who has complete history on him & knows him.

Your feelings are normal. You need to step back, evaluate, prioritize, then tackle one thing at a time. Don't allow yourself to become overwhelmed by the number of issues or the magnitude of any one problem. Just deal with each one. There is peace in dealing with "one day at a time"....tomorrow has enough of it's own problems which may or may not materialize. Just deal with what you can today. Tomorrow will take care of itself. Talk to a clergyman. They are trained to help you deal with your fears and anxieties. Pray and pray again. Contact your state and local elder care groups. They are a wealth of information and help. They will guide you and help you get the assistance you need. You are not alone. You have to know that by the number of replies on this site. Has your husband been properly diagnosed? If not, you need to find out what the problem(s) is(are) and that it(they) are being treated properly. Medications can do strange things...not always for the good. You need to have ONE doctor and you have to tell him everything...what meds he's taking, what he does when/how, keep a journal, take it with you, document all that goes on. The doctor cannot help you or your husband unless he has all the facts, not just guesses or "I think so's". The more you can tell him the better things will be. Stay strong and don't give up. Sounds like you might be on the right track, but you have to stay the course, as tough as that might sound. There were many, many times in the 18 months I dealt with my husband's Lewy Body Dementia that I felt totally alone, isolated, abandoned...it's natural, but that doesn't mean you have to give in. There were many times I told myself, "Suck it up, Marine!" Stop...take a deep breath...reevaluate...re-analyze...then decide what to do. Don't jump in head first, but you must jump in otherwise you'll be drowning in self-doubt and fear. You CAN do this! You ARE strong! You ARE capable! Don't let anyone tell you any differently. Remember, "one day at a time, dear Jesus, is all I'm asking from you." And that's all we have...one day at a time. Good luck and God bless.

Everything you said is me exactly.

He's in the crawlspace? Lock him in LOL! Sorry for your pain, you came to the right place! No advice right now, but keep posting.

Trust me we all go through these periods. God knows I went through this the other day. We all have times we feel lonely and isolated. That's why I come on this site. I know I have a church group that will bring meals if needed but what I really need are sitters for mom so I can get out. Her friends all have health problems of their own right now and can't help. We have a paid caregiver one day a week so I can go run errands and what not. All I can say is you need to take time for yourself. I'm trying to get back to doing my meditation at least once a day to keep me from going insane. You can try caringbridge.com and ask people to sign up for a few hours here and there to give you a break. It worked for me for mom for a while and it may work again when her friends have recovered. Just know you're not alone we're all in the same boat (granted sometimes it feels like that boat's the Titanic) we're all caregivers. It's a thankless job but as one of my mom's friends said "It's noble work."

vent all you want and if you need someone anytime of day (as well as this group) I have found some support groups through facebook. We are in a big boat with a lot of other people like us, but this life can still feel very lonely. You did a good thing by posting on here. Call your county office of aging, here in PA they base what you pay on your income. Sometimes local church groups or scout groups are willing to help with maintenance tasks around the house. good luck to you.

I live in Waldorf also! Have you contacted the Clark Senior Center (301-932-2078) www.charlescountymd.gov/cs/aging/aging-and-senior-programs in LaPlata? When I asked for advice about caring for my mother they were able to help me!! Also there is the Community Services office in Pomonkey that may be able to help. I wish that there was a way that we could connect here on-line....

Kathleen, I have dealt with Group Homes for 35 years, which is a type of Assisted Living for developmentally disabled adults. I agree that you keep the patient in the home as long as you can. Let's face it, if everything is rosy, they're not posting on AC. They are not begging for help.
When the home situation is becoming a battleground, the patient is better off elsewhere. My sister is happy in an ICF, My MIL loves her ALF. Both have appropriate food, handicap accessibility and social peers. Does that mean I do nothing? NO. That means I prod gently, I ask staff how they are doing, I review medications with the nurse, I check off for notifications on everything possible. I show up unannounced. I talk to other residents. Eyes and ears up all the time. A frequent visible presence tell them you care, you are watching, you will catch mistakes, you will hold them accountable (in a friendly way). 90% of families don't show up and only call to complain. There is a better way.

I have also noticed as a frequent visitor to agingcare that almost every comment suggests putting the subject of these posts into either an ALF or NH. There are many of these posts that would not suggest the subject is even qualified to be in one & yet almost every comment suggests admit them to an elder facility. It is actually started to make me wonder what this means about society in general or especially what kind of focus this site has. Most ALFs or NHs are members of large burger chain corporations meaning that any member of the healthcare profession living in any part of the country could be on here drumming up business for the chains of facilities. I hate to say this but I am concerned about the number of healthcare professionals on meetup & the number of suggestions for hospice or facilities on here. Most people on here are caregiving at home & I am wondering now about this site & my trust of it. Sorry to say that but the site is open to anyone to post & even if you live in Maryland any of the commenters could work for a chain of facilities.

As far as Meetup goes I live in the Dallas area and I just visited Meetup online & I entered caregiving in the search term & there was 1 group of 4 members & when I clicked on each of the member's names they were in the healthcare profession. I then entered the search term caregivers & there were no results. When I entered healthcare or health/wellness I came to Yoga groups & health food groups. I have not tried the suggestions above regarding divorce groups although I do not think that would appropriate in your case since your husband is living. The Dallas area is large & there are several meetup groups however Meetup is generally geared towards the young or single or both. There are other community resources that might help on the friendship end of things but I would like to know the general area you live in. As for the facility idea that one sucks. As a very loving adult child I would say run screaming for the hills if anyone suggests you put your loved one into a facility for old people. I would not do that until he is physically at the end & you cannot physically care for him meaning bedbound or needing life support. One of the many problems with having enough beds to go around & the healthcare crisis facing us is that people are facilitated earlier in life than they used to be in my younger years. Mom, Dad & I cared for my Grandmother in our home & she was a huge asset to our family & she did not go into a home until the last few months of her life. Now people spend years in a NH & no wonder there isn't money or beds left for the new ones needing it. No I would keep him with you. If I could do it again I would never have put my parents into a home at all but there were 2 of them with alz & only one of me & that changed the scenario completely. I wish I had kept dad at home & put mom in. My life would have been much easier than it is now had I kept either one or both at home.

What part of Maryland do you reside in? What town?