mlg

Kay, Since Tom died I tried going with my one daughter to her in laws and felt out of place there so two years later I tried my other daughters grandma in law. The people were nice but I had nothing to talk about with them so went home early . Tried again the next year. Last year I bought a turkey roll at Walmart and some Bob Evan's mashed potatoes , green beans and cranberry sauce. Had my own little Thanksgiving and watched Hallmark movies all day and had the best Thanksgiving in 11 years. Sometimes it's better to be by yourself.

Johnny, I was reading that your anniversary of Renee's angelversary is coming up soon. It is amazing how some things change after that first year. It's not that you forget but more of the "good" times come to the forefront. You still have that knot in your stomach. Not sure if that ever goes away, but the hurt is softer. I'm glad you already have plans and if tears come , they come. Tears are God's way of cleansing our souls. It will soon be 12 years for me and I can still remember the first time I laughed. It was like , what was that sound. I'm sorry you didn't get to have a long and wonderful marriage and I don't know how long you dated but try to remember the happy things you did together. Will keep you in my thoughts. I hope you have someone to visit on Thanksgiving.

Gwen I have a friend that sounds a lot like you. She was in constant pain and worked as a nurse so on her feet a lot. She has had so many procedures to try to control the pain I probably couldn't count them. Several months ago the put in an interthecal pain pump and she said it is the first time in a LONG time her pain is pretty much controlled. You might ask if that is something that would help you. I'm really not sure which type of Dr put it in but if you need more info about it I could ask her. Also when you talked about Alladin have you thought about getting Disney+? It is 6.99/mo and has 5 different programs you can go in to. It has the old Disney movies but also new ones not in the theater. If things like that can soothe you it would be well worth trying and if you don't like it, cancel it. Can totally understand the eating thing. It had been several years after Tom died that I went to KFC and had to literally make myself sit there and finish my meal. Hated EVERY second of it. The only place I can sit and eat by myself is Panera and I think that is because when I used to go shopping that is where I would go.. At home we always ate at the table and now unless someone is here I never eat at the table. Only time we would eat in front of the TV was during the NCAA basketball tournament games and now I eat there almost every night. I have to say that I got an airfryer oven for christmas and it has been great because it is small so when I put food in it doesn't look lost and it is moist and tender. It took me 7 years to really want to cook again. I still wish someone else would clean up the mess. I hope you find some help before long.

We had a patient once that we just got her blood pressure under control and the company notified us that they were no longer going to pay for it. This went on for 2 more times in 6 mos. How are the doctors suppose to do the best for their patients when they tie their hands all the time. If it ain't broke don't fix it. The same things with precerts for certain radiology tests. Do some jump to do them before trying a more conservative treatment first? Yes and I want to scream, you know they aren't going to do this without x,y.and z. Are there other times when it should be perfectly plain that the pt needs this. Yes, so don't give me a bunch of trouble. Maybe someday they'll get this all figured out. I'm sorry so many of you are going through all of this. Just keep advocating for yourselves.

Jen, Hope you listen to this and know that no matter how sad and despondent we are there is hope.

Marg M I know what you mean about having your faith. If I didn't have God in my life I don't know what I would do. I don't understand why this happened and I can't say I'm happy about it but I accept God's will with a heavy heart. Tom had a perfect physical including colonoscopy 3 weeks before his diagnosis and nothing was even a little out of whack. That's when you say thy will be done. I hope someday I will understand.

Kay, I'm with you about wondering if you will truly ever get used to this life. There are so many things I want to say and he's not here. He would be holding me and telling me he loves me when others are making me feel like when I was in high school. I'm only good enough when they need something. They tell me how much I have helped them through this time and they are sorry that they didn't realize what I was going through until they went through it. Everything is fine if I invite them to do things but do they ever include me. Nope. Feeling sorry for myself recently and my poor dog has to listen to it all. Poor thing.

Kay , Your one dog died didn't it? Is Joe one you inherited because of all their other things? You are really nice to leave all those apples for the deer. You said they were really tart. Are they transparent apples? If so they do make really good apple sauce. Not as big as other apples , we just used for applesauce. Is it getting cold up there. It's been chilly here. There was a 16 degree swing the one day. Now it's more like Oct. weather. We had our Chilifest this weekend and had really good crowds. Last year or the year before it was almost 90 and this weekend did good to get to 70 and that's more chili weather. Take care and get geared up for winter.

I live in a town of 11,000 and we have someone here part time. Otherwise it takes about 25 minutes. I'm sure you will figure it all out. I'm lucky to still be covered by my husband's insurance and hope it continues. I'm always waiting for them to drop the shoe. Have a good day ladies.

Jen Most places have an actual room or building you can go to to discuss things if you need face to face rather than phone.

Do you like to be called Gwen or Gwenivere? Our hospital used to have someone who would help you pick the best insurance to help you with your diagnosis and your meds, do you have anything like that? Our Senior Citizens Center helps also. As for medication help a lot of the pharmacies will help you with which one will give you the best prices. As a nurse who works with insurance almost every day that I work it can become very, very frustrating.. I can only imagine when it is influencing your life how frustrating it can be. I wish I was near you (which I don't know where that is ) so that maybe I could help you with things. I will hold you in my prayers.

Gwenivere I went back and read your first post. Your analogy to a book is so true. Tom always hated Christmas so you'd think Christmas would be better without him but when I got the stuff out to put up the tree I couldn't do it. All the ornaments were our book. About our family and the places we'd been through our 38 years together. You mentioned that you like dogs. Do you have a dog? I'll tell you when I am really down my fella is my only salvation. He is so happy to see me when I come home and always goes to bring me one of his toys as a present. When I 'm really low he listens and never talks back. He is a warm body next to me in bed. So if you don't have one it is something you may want to consider it.

Gwenivere, Just sit down and take a big deep breath. Maybe find a time every day that even if it's just 10 minutes that you just sit down, close your eyes and take some deep breaths. Maybe have a cup of tea and a cookie. I don't know if you are a religious person but maybe say a little prayer for God's help at the same time if you are. Do you have friends that can support you. I have found that is my best thing. Have they given you a website about your new insurance so you can see if your Dr's are on it or if you know the name of the insurance call your Dr's office to see if they accept it. That would help take one thing off your plate. If they don't try to find someone that may have the new ins. already and see whom they see. As far as the Dr. you saw that wasn't covered; did you get the name of the person who told you that you could see them. If you did I'd try to fight the ins. A hint from this point on when you speak with ins. always put down the time, the date, the person you are speaking with. As a nurse who deals with this a lot it can save you a lot of time and aggravation down the road. Just take baby steps not giant ones and it will not seem so overwhelming. Hope something in this mess I wrote helps you. I don't get on here as often any more and have only seen a few things about you so don't know your whole story

Kay, I am so sorry to hear about Arlie. I look at my Shadow and he is 10.5 and getting a little white around the mouth and I don't like that. Our other rescues lived to 16.5 and 17.5. I hope he lives to about 25, but just like with Tom I don't want life to be hard on him either. I was laughing about Arlie tearing up everything. For the first 14 months so did Shadow but one of his favorite things was electrical cords. My 9th grade science teacher really saved me a lot of money because he taught us how to change cords and plugs. He would also tear all the squeakers out of all his toys. Suddenly when he turned 15 mos those toys became his babies and nobody better hurt them. He even knows what squeak goes with which baby. I also learned if I left the TV on he didn't tear things up. Guess he thought I was still there. Glad to "see " you again but hate that you have more pain in your life. Do they have low income housing around you or are you still set on living in the country?

Marge, When you were talking about the oxygen and just give it to her. The problem is that with chronic breathing problems it is not that easy to adjust. Most people think they are having trouble breathing so give them more oxygen when actually the opposite is true. A normal person may get 8-10 L where a person with COPD only gets 2-3L. otherwise the carbon dioxide takes over and further suppresses their breathing. MLG

Marty, I actually did contact the hospice. When it was centered in out town, it was wonderful and our local nurses were so empathetic and caring and could be to a house in a short time. The hospital was then bought out and as you know big isn't always better. The one day Tom had not urinated but his bladder was distended and I tried everything I knew to do as a nurse. I didn't want to bother them through the night so I waited until 8 am to call. I was told our nurse was in a meeting and they would have her call back. I waited until 10 and called back again and had to leave another message. After calling back again and again I finally got a call back after 4pm so the nurse said she would stop on her way home. I asked her if they still had Texas catheters because I felt part of the problem could have been that he was afraid of wetting the bed. I realize as you get to life's end urine production slows down but I could tell he was uncomfortable. It took several hours to go but once he did you could tell he was really uncomfortable. The next day when our regular nurse came we were talking about the siituation and she said that she was not even at work the day before and they should have known that. She was 100 miles away. This was not the nurse's fault but the office staffs and when I sent my complaint I made sure they knew that. The final night the poor nurse had to come almost 70 miles in the dark to a town she didn't know which I didn't feel was fair to her or us. When you are at the end minutes seem like hours anyway. They set up an appt. to speak with me. I knew that part of the problem was that they had basically run off all of the local people and the one that was left was in Egypt on vacation. I told them office staff definitely needed some training because I felt there was no excuse for someone to have to wait 8 hours for a response. I don't think it take a genius to figure out that probably the best thing to do would be to take the "hospice Home" as the center and draw a big circle to encompass their area. Then put on there where all their nurses ate and if an area is short the partially encompass them with an extension from either side and set up an area for each section. They kept trying to blame it all on the nurses and I finally asked if they did not read my letter because I specifically said that I wasn't complaining about the actual care once they got there but the continued trying to blame it on the nurse. Honestly their visit was a big waste of time. Finall people started finding out about other hospices and it put them basically out of business.. Hospice is such a good program but it has to be set up and used correctly. Don't wait until the final hours to put pt's in hospice care. because then the pt nor the family get any benefit and at least around here that is what is done most of the time.

After reading these posts I have so many things running around in my head I feel like it could explode wanting to help all of you but I haven't healed myself. I just hope some of my comments will help some of you in some way. 1. First of all there are different steps we ALL have to get through to move along in this journey. None of us will go through them in exactly the same manner and some of us will revisit some of the phases before we get to another one. That doesn't mean there is something wrong with us. Denial and anger are probably two of the biggest ones. Some people spend "seconds" in a phase and others could spend years. Some of us will never go through some of the phases. 2. Joining groups is good but sometimes you have to search to find the right ones. Just like this group, sometimes I have a hard time getting people to see the possible value of it. What I like is that it is here 24/7. I can read responses and know that I'm not going bonkers because others are feeling the same way. I found that what made me feel the best were the things that helped others like the Grab and go lunches we do for the underprivileged kids in the summer. The community garden which gives me fresh produce but also gives it to the Food Pantry and the Senior Center. Missions for Taylorville which initially helped people in our town twice a year with things they couldn't do for themselves, like pull weeds, paint porches and foundations, build lots for many to help them become more independent, paint houses, etc. This all changed 12/1/18 when our town was struck with an EF3 tornado which wiped one entire part of our town. Luckily we had no fatalities. Our focus now is to help the un and underinsured. Thus far we have given $80000 out to help these people but because of the weather there isn't a lot we can do to help them get their lives back in order. Once the weather breaks hopefully we will be able to help in more ways, but right now some of the natives are getting restless. We keep telling when the time is right we'll try to help them more but that doesn't mean much when you have no house, you are living in strange place and just want your life back together. 3. Hospice is a really touchy subject at times. By it's definition it is felt that the patient will not make it in this world for more that 6 mos.. That scares the bageebers out of a lot of people because they feel you are not going to do anything but just let them die. Hospice is suppose to help the patient and their family and sometimes friends , emotionally, physically, nutritionally, religiously, etc. It is to help you to have the best quality of life as it can. They don't understand that some people get off of hospice and live several more years. It is not just for patients with cancer; it is for diabetics, those with COPD, those with kidney failure, etc. I think a lot of Dr's haven't had a lot of experience with it so don't feel comfortable with it so they are hesitant until the last minute so the patient and family don't get the benefit. Having to stop some treatments to be on hospice scares them also. Dr's worry that you will sue them and patients feel they've been hung out to dry. I had 3 wonderful experiences with hospice but the one that counted the most (my husband) was a disaster from the opening of the gate. They were to call us the day he got out of the hospital. At 7pm we hadn't heard from anyone so I called. That person was not the intake person but said she would contact them. She called back and said they would be at our house at 10 am. The nurse came and didn't have over half of the papers she needed. She apologized and said she wasn't the one that was suppose to be there but the other one had an emergency. OK we'll try to forgive you . The next day his case nurse came and asked if she could use the phone before we started because she had locked her keys in the car and she'd rather get the process started before she started with Tom ( guess it makes sense) She got a call back and they couldn't do anything because she didn't own the car the home care did. Another call to try to get this resolved. than another call and another. Finally Tom who was sitting at the end of the kitchen table stood up and slammed on the table and said when she got done with her blankety blank calls then she could come take care of him and went to the recliner in the livingroom. These were just the first two days and there is much more that maybe I'll get in to later. Just wanted to say hospice can and can't work and it will be with you for the rest of your life. Enough of my rambling. I hope something in this "rant" has helped at least one of you.

The empathy I feel for you is bounding. I lost Tom 2 and 1/2 weeks before our 37th anniversary and about a month before my 60th b'day. Feb 6 would have been our 48th anniv. and instead of going out for a nice dinner I sat here with my dog. I was glad to have Mr Shadow here to have something warm by my side. Like you, everything wasn't always perfect but together we could do anything. Nothing could stop us but cancer. Do you have a pet? It's amazing how much better they can make you feel. It's somebody who loves you no matter what, is glad to see you when you get home. It may be something to think about if you don't already have one. I'm not going to tell you it gets better but it does get more "gentle". At some point more of the happy thoughts will come to the surface and help push the sadness aside. I can't tell you when that will happen for you, but I'm relatively sure it will

I'm sitting here reading these posts and have had so many of these experiences. I was lucky to make so many good friends in my grief support group and we have done things together. Although I love them and enjoy them I hate that "widows" seem to be the only people I can hang out with and feel comfortable. I had a friend who lost her husband last summer and one of the times I went to visit her, she said I have to apologize to you. I was a little confused. She said that until now she had no idea what I was going through and she felt bad about it. I told her that no one knows what it is like until they are there. I think that is the problem with other people but I want them to do as many things with their spouse as they can because you never know when they won't be there. Marge M, I too have a friend who was never able to grieve her first husband. It was Christmastime and she had 3 little kids expecting Santa. She has told me she will need me if something happens to her present husband because she was never able to mourn the first so it's going to be a double whammy. I hope I'll still be around to help her. We all want our friends to be happy, our kids to live their lives but that doesn't make it any less lonely for us. Several of us were talking one night and totally see how some of the left behind spouses become alcoholics. It was be so easy to try to drown your problems but that will only bring more problems. None of us has the perfedt answer but we have everyone on here and can be totally open with them So cheers to us.

My poor dog has to take all my wrath. I so miss Tom's teasing. He could almost always make be laugh even though I might try to not show it.

This is odd and I hope I don't make things worse but since Darrell's love was Cookie I hope is doesn't hurt when I say Darrell and Cookie (referring to the other contributor) I haven't seen anything that makes me believe that you have children, do you? If so are they physically or emotionally close to you? I can't tell you it gets better because it just was 11 years for me and some days it is like it was yesterday. Since none of us on here really knows the other person it is hard for a long time to try to figure out what to say. Sometimes it just takes going through things 2,3,4 times to get it anywhere near right. I had read several of the posts about Thanksgiving and this year I think I finally got it right for me. At first I was invited to my youngest daughter's in laws but there were some of them that made me feel like I was butting in so I decided that wasn't for me.Then I stayed home. Then my older daughter asked me to come to her inlaw's dinner. It was nice and people didn't make me feel like I was butting in but I just didn't have much to talk to them about because I really don't know them well or what they do and things they like. I just couldn't participate in things. This year I decided just to stay home and got myself a small turkey roast, made mashed potatoes , slaw and cranberry sauce. After lunch I sat and binged on Hallmark movies and about 5 a friend called and asked me to come play games at her daughters. On the way home I stopped by my youngest daughters for a minute. It was the best Thanksgiving I've had in 10 years. So hopefully eventually you will find your nitch too. It just takes time and it's different for all of us. Just don't be so hard on yourself. Shirley, You are just beginning this journey. Take all the time you need, whether it be minute by minute, hour by hour or day by day. Make it your own speed and if you have to back up don't be ashamed.

Oh, how I can relate. Several of us ( a lot that became widows about the same time) went to the Shawnee Wine Trail for a girl's weekend. One lady's husband decided to go visit his sister in Tx since she was going to be gone. She was so angry at this and I said why didn't you go with him then. She said because she really didn't want to. She kept going on and on and I finally yelled, "just be glad you've got him to be mad at". Then I shut my mouth and thought , what have I done? I apologized and she said it was ok. Two or three years later her husband died suddenly and she came up later and said, Now I get it" The thing is until you've gone through this you really have no clue. I guess if you didn't have a good relationship it would be different and maybe you'd be glad to be out of the relationship but I don't think that is it with most of the people on here.

Cookie, Give the pup some time. He will never replace your husband but the one I got about 18 mos after Tom passed I swear is Tom incarnated at times. I've always hated for anyone to touch my feet and the first thing he did was lay on my feet. It is so nice to have someone to greet me and genuinely be glad to see me to see when I come home at night. He gives me a purpose. We play this game at bedtime about whose side of the bed is it and Tom was always a big teaser. He likes to snuggle and try to keep me from going to work. How long have you had Rio? Did you have a dog before. I know it is cold now but in the spring maybe if your town has a dog park or just walking him may open opportunities for you. Good luck and be patient. Remember it's a step at a time to get through this.

Try not to be so hard on yourself. I haven't been here in a while so I read a couple of your posts and some of them sound so much like me. My 5th year was my worst and I felt like I was falling in a hole that I wasn't so sure I would get out of. I finally had to start medication and don't be afraid to do this if you aren't on some. It really helps manage a day. I didn't see if you had worked before Steve got sick or not. It doesn't sound like you are working now. I don't know how big a town you are from but one good thing I did for myself was I joined a water aerobics class at the Y. I did it because I have a a lot of arthritis and thought the water would help and it does but also I am a people person and needed some interaction. This was one of the best things I did for myself. We even go out to eat together once in a while. I won't bother you with anything else until I get to know you a little better.

Thank you Marty. I can't say I'm glad to be back but I always know there are good friends on here. I have lost so many friends this year, it really brings you down. I know the older we get the more often it happens but that doesn't help. A friend of mine that passed away several years ago and she had 3 daughters and I try to keep an eye on them for her. Her oldest daughter (49) just lost her husband and I told her she needed to try this forum so I was looking in to see if my old friend Kay C was still here and she was. I hate that we have lost Wendy . Even though I have never met these people in person I feel that they are my friends. Glad to see that you can keep this site going. MLG