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About mlg

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    Advanced Member
  • Birthday 02/23/1948

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  • Date of Death
    Jan. 18,2008
  • Name/Location of Hospice if they were involved:

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  • Location (city, state)
    Central IL

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  1. 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.
  2. 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.
  3. 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
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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
  11. Lainey, I am so sorry that you have had to go through this twice. I can't even begin to imagine. Like you said, you got through it once and you WILL get through it again. Just give yourself time. Small children especially can help us through many a day. Do you have a pet or would you consider getting one. That is one thing that has gotten me through many a day. that unconditional love just can't be beat. I can understand in a way some of the things you are saying about your step children. Just don't expect too much from yourself. Take it slow and easy MLG
  12. Dear Linda, The 5 year mark was my worst year. I was falling in a big dark hole and I was afraid I wasn't going to come out. I finally went for counselling and started on medication. There was no rhyme or reason for this unexpected feeling. So to answer your question, you are perfectly normal. Yo may have to go back to the beginning and take it one minute or one hour at a time to get through this but you can get there. It just slow and steady. Keep coming here because there are a lot of good people on here and Marty won't let you drown. MLG
  13. I noticed in reading through the posts that you and I share an anniversary. Ours would have been 46 this year. It is always a hard time on me because he died Jan, 18, our anniv. is Feb 6 and my b'day is Feb 23rd. Even though it's hard it helps that I have another friend who lost her husb around the same time and we can console each other. You were talking about the master garden class. I finally last year (8 years out) made myself figure out things to do with my time. We have a community garden so I started helping with it 1-2 days/week. Do you have something like that? Made some new friends, renewed some old acquaintances and got my hands dirty. Just a thought. You mentioned that you were only 8 weeks out. Don't be so hard on yourself. You are probably at least half way in the "numb" phase. Each of us handles things our own way but don't put added pressure on yourself. I hope being able to vent on this site will help you as much as it did me. Mary Linda
  14. We all look for those special things from our loved ones. I'm sorry that you are having to go through this. Glad your daughter went with you. Just keep yourself busy with whatever and I can't say it will get better but it will get softer, if that makes any sense. Mary Linda
  15. I haven't been on here for a long time but just happened to get on tonight and see your post. Does your hospital have a patient advocate or an ombudsman?. If not usually states have one that you could probably contact to help you get through all the jargon. Sometimes a parish nurse will help you get the answers also.
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