ruthwilliam

Stroke Caregiver - female
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About ruthwilliam

  • Birthday 01/18/1954

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  • Stroke Network Email
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  • Stroke Anniversary (first stroke)
    12-13-2013
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  • First Name
    Ruth
  • State
    Texas

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  1. Sue, As usual your writings are so inspiring. I hate to hear that you have medical issues to deal with. But, yes I understand the day to day life that a caregiver has. It has been almost 8 months since William passed. Yes, like you, I sometimes think that I hear "Ruth, where are you?" . I have been keeping myself busy. I Spend hours at the gym and physically exhaust myself so that I sleep soooo well. I have gotten involved with the church and made new friends. Life has been good to me. I still love learning and take classes at the local community college. Please take care of yourself. I pray for you constantly. Ruth
  2. This transition to widowhood has been easier than expected. That is because the good bye was a long one. 3 months before William died, my son, had come down to visit. He told me that William was declining and suggested that I look into hospice. I wasn't ready for that. But it got me into really thinking about life without William. So my good bye was a long one. Then the month that I put him into hospice was the real start of the end. Everyday was like the last time that I might see William alive. Especially when I had to put that hospital bed in the living room. Then the last week was really hard. That was when I afraid to leave the house because I felt that every breath was going to be the last one. The good bye was soooo long. I am so happy that William is out of this life. He so wanted to get out of that hospital bed. But, I was not able to get him out by myself. I felt so bad. I had been able to take care of him by myself when he was able to give me some help. But at the end he could not help me anymore. I am taking classes at the community college, taking bible studies and getting involved with the church. I did start going to a different church because the one that I went to with William would hold too many memories. I walk the dogs on long walks. I still go to the gym every morning. I like to swim and started doing the machines this year. The gym does not hold a lot of memories with William because he did not come but a few times. It is freeing to be able to be out and about. I no longer have to rush home and check on William. I don't have to stop and by him something special to eat. I don't have to save part of my lunch for him to share. I will be going on vacation with my son to Mexico. in early November. I will visit him at Thanksgiving and Christmas. This will be the first time in 10 years that I have left the house and flown. I am planning on going on a mission trip with the church to Mexico. in January. I will go on the women's retreat also. I may possibly go on another mission trip to Kenya. It is so amazing that I can actually leave the house and do stuff. Life is going on and sometimes I get a little sad. But nothing like the 3 months before William died. I will decide on when to move out to California with my son. I am going to wait for a year then get my things together to move. The last week that William was living was when I packaged up most of his things. Now, I just have get myself together and get my clutter under control and start the process of moving. I have gotten a lot of the paperwork done. This has coincided with my pension starting. But, fortunately all of this paperwork has been mine to deal with for years. But, I hate paperwork and procrastinate. It is amazing! I am able to sleep at night. THat last month was so hard. I could not sleep at night. William was always up and so was I. I sometimes wake up at 1AM and then am able to fall back to sleep. I am at peace. When William was here, I had to very vigilant 24 hours of the day. I did not sleep a lot. I awoke at the least little movement or noise. I just thank God that I am able to get a good night's sleep.
  3. Sue, I am very sorry for your loss. I am sure that you enriched his life tremendously. Ruth
  4. William passed yesterday 9-18-18 at 1:06PM. William had been in hospice for 1 month. This has been the longest month of my life. I am so relieved that the vigil is finally over. Here it is 2:40AM and I am up. I am so used to getting up and checking on William. I want to thank all of you for being there for me. I want to share that the stroke board has been a lifesaver for me since William's stroke 10 years ago. I would suggest that anyone who needs hospice utilize it. I thought that I was getting hospice in place early and I used it only for a month. They provide a wonderful service. They enabled me to keep William at home and let him die peacefully at home. When I needed more help they gave me more help. I started with help 3 times a week and ended up with help twice a day , every day. This month has been a vigil that I am glad is over. When William stopped eating and drinking, it became a matter of time. I have wonderful friends who live around me and were able to support me through this time. I was able to call upon them to be with me when I was afraid to be by myself. I do encourage you to reach out for help when you need to. Do not make yourself travel the journey by yourself. I know that many caregivers have traveled this long road with me. What amazes me is the accolades that I get from everybody about the way that I cared for William. I am called a Saint, an amazing person.....but I know so many from here that have done the same. So many of us have devoted our lives to our loved ones. William's death brought closure to his estranged children. They were able to see him in his last days. Miracle of miracles who was coherent and able to speak with them. He was able to see his ex-wife. Life is amazing. Now onto the next chapter in my life. What is going to happen? I went out to dinner with 3 of my friends last night. It was so good to get out of the house. Friends are wonderful. I will be having lunch with another bunch of friends today. My old YMCA bunch. I have my trips to California to look forward to in November. The quilt festival in November. I just got off the phone with William's cousin. It was nice to reminisce. I just want to thank everyone for their support. This board has been a Godsend to me. Thank you.
  5. It has been three weeks. I cannot believe it! A bed sore! William has never had a bed sore. But this just lying on the bed for 3 weeks has done it. I have been changing the underpad often. It is difficult to change by myself. I have called hospice and informed them that I will need help twice a day to change and clean him. They have agreed to do that. It is 3:28AM . I have been up since 2AM. I got the kitchen all cleaned and cleaned the floor of the living room. William is usually up this time of morning. Thankfully he is sleeping peacefully. When I changed the underpad. He asked for a sip of water. He had a couple of swallows. I am just praying that he will go peacefully before his skin deteriorates more. The CNA comes and bathes him and I have to be the one that is looking for that. It started out as a skin discoloration. I have put a pillow under his bottom to shift his weight. This morning his eldest son will be coming out to say good bye. They have been estranged for over 25 years. I do not know how responsive William will be. But, this will be closure for his son. I hope that perhaps this is what William has been hanging on for. The chaplain was concerned that perhaps I am not ready. But, I do feel that this will be a relief. I hate to see him just lying there. Yesterday and the day before. He kept asking to be let out of this bed. I tried to explain that I could not safely transfer him. I did feel so bad. In the past I would move him from the bed. It is strange the nurse wanted to check his heels for bed sores on her last visit. But, she did not check his bottom. I remember my son telling me to always check his backside for bedsores. He said that nobody really looks there. William is sleeping so peacefully. I am so used to waking up and checking on William. I wonder if perhaps I will be able to sleep through the entire night without waking up to check on William. Well, we shall see. I did buy tickets to go to California over the Thanksgiving holiday. I will spend the holiday with my son. It is so strange to make plans again. I am so used to staying at home and taking care of William and the dogs. My friends will take care of my dogs for me. It will be strange to be on a plane again. Imagine it has been 10 years since I last traveled. I wonder if my minimalist idea will really hold. I plan to shedding a lot of stuff for my move. But that will be in year or so. It is so strange to think of life in the future. Two days ago the hospice nurse thought that William would last thru the night. But, he is still here with me. Everyday,,,I wonder. He has lost so much weight and looks gaunt. This is a fellow that has always had trouble with his weight. A friend of mine told me that I should cross fold a sheet and lay it under him. This would help me to turn him. I will do that when I have the nurse come in today. This morning he has been compliant and let me turn him by myself. Maybe he is getting too tired to fight me. I have scheduled a nurse to come out tomorrow and a CNA. I will call them again on Monday to make sure that they have the same thing set up for the week. Who knows. I may still need all of that help.
  6. Tracy, sleep can be elusive. I hate to hear that you have trouble getting that good nights sleep. Anxiety can be such a bear. Somedays, I get it and have nervous energy. This is what I do. I make sure that I get to the gym and work out. If I don't, I will be up all night. If I happen to get up in the middle of night and cannot go to sleep. I clean. This is crazy. but it makes me feel good that the place is clean. I have at least accomplished something with all of my nervous energy. I will pray that you find something that helps you. Ruth
  7. Dear Sue, I hate hearing the news. But, I love the title of the blog. Living on Angel time. You have been such an inspiration to me. Your blogs have sustained me and inspired me. You have the spirit that is so loving and giving. We caregivers are a special group of angels here on earth. It is amazing to me how we touch each other. Living each day, as a gift from God is the only way to go. I Love you. Ruth Your are amazing at writing.
  8. This is a difficult time. I thought that I was getting hospice involved early. But, William declined rapidly. My best guess is that William may pass today or very soon. I was so afraid that I would get up and find William gone. I kept getting up every hour. I am not doing my ritual gym thing this morning. I want to be close by. He is calm and peaceful. He is not agitated like he has been. I actually did go to the gym.. Just later. This will be a long and difficult vigil. William is now resting peacefully. He complained that his foot hurt him. I offered him some pain medication which he refused. I am blessed with wonderful friends. I have had calls this morning from friends that have offered to sit with William and give me a break. I will take them up on that. I need to get to the gym and work off some of this nervous energy. But, I have the hospice nurse coming out. I do not know when she will come. I sent her a text. I need her help in changing the wet underpad. Hospice has been really wonderful. I am able to keep William at home with their help. He has been in and out of sleep all last night. I will now have William in Diapers. This will hopefully make it easier on me to keep William clean. The bed control is not working. I will have to call hospice and have them send somebody out to fix the control. William ate 3 teaspoonfuls of applesauce this morning. He did not know what it was. I was able to take the dogs out for their little morning walk. I will be waiting around for the hospice med drop off. Last time they said it was from 8:30 AM to 10AM. I will make it to the gym after 10AM. then I have a friend coming out at 3PM. I am spending more time sitting next to William. I am not going upstairs and sewing. I just don't have the concentration to do that. Well, William rallied and was more alert and did not have that funny breathing the next day. This waiting is not a fun process, but just part of life. I really hate deaths at this time of year. Thanksgiving and Christmas follow.. I am trying to think of what I plan on doing. It has been just the two of us for long. I may travel to my son's, tickets are not very expensive now. But, I have 3 dogs. Friends will take care of them. But, I still hate to leave them. I still need to ponder that idea. I started this blog two days ago. Wm rallied and is still hanging in here. It is 2AM Sat. 9-8-18. He is up and responsive. Calm and peaceful. Hospice sent somebody and they fixed the bed. It was actually my fault. The plug is connected to a wall switch. I had the switch in the off position. The guy said that the outlet was not working. But, I didn't tell him. It actually is working, I just had it in the wrong position. My friend gave William such a wonderful gift. She came out to sing for him. What a marvelous voice she has. She sang hymns to him. It was beautiful. The gift of music is wonderful that she shared it with us. Today the CNA will come out to help me bathe William. I will head to the gym early and be home to await the day. It is so nice to have hospice to call when I need help. I have been told again and again that is amazing what a job I have done with William for so many years. I know that other caretakers have done the same. But, from the comments, it is not the norm. They have all said that William is so blessed to have been taken care of so well all of these years. I have been privileged to have been able to do what I have done. Let me post this now.
  9. Sue, Yes, it seems that life is unfair. Caregivers ending up by themselves. Yes, we can stay on our own as long as we are healthy. I fortunately have my son, who is encouraging me to get ready to move to California when my time in Texas ends. I have preregistered with a funeral home and am slowly getting rid of some of my stuff. Most of my friends are older than I am and say that I am still young. It seems that I have lived a few lifetimes. I try to live each day to the fullest. As we know each day is a blessing. Ruth
  10. Well, I finally made the decision to talk to hospice. William has been declining. He sleeps alot and eats very little. He has alot of confusion and sees people that are not there. The hospice agency was great. They have suggested that I get a hospital bed and set it up in the living room. I will be getting rid of the couch and recliner. They provide all of his meds, bed liners, vinyl gloves, wipes, lots of things. I will get a nurse once a week and CNA 3 times a week to bathe William. A chaplain will visit him weekly, and they have volunteers that will come and sit with him if I have to go out. They have respite care for the caregiver (5 days each month). I fortunately got all of our paperwork in order. Medical power of attorney and medical directive for physicians. Today, William has been up and cognizant most of the day. He even ate a banana, applesauce and a little sausage patty. Not much appetite but since he hasn't eaten for 2 days this is good. We shall see how things work out. It has been ten years since his stroke and his decline has been slow but keeps progressing. Who knows what the next steps will be? Quality of life needs to be an issue. William has been housebound for over a year. Hospice could be used for a long time. They just renew after 6 months. This could happen with stroke patients. Ruth
  11. Nancy, I can understand your predicament. The job, still caring for Dan at the nursing home and paying for his care. But, doing all of the work and getting a house handicap ready will be expensive and taxing for you. It is so difficult to make that decision. But, you have to look at all of the angles. Especially your own health. Ruth
  12. Does massaging the leg help. Sometimes you can push the fluid around. I am sorry to hear that you are having such a hard time. Ruth
  13. Sarah, What a blessing. Dan is still giving. What a beautiful and heartwarming story. Thank you for sharing. Ruth
  14. I am glad that you feel that way. Education needs to be done for strokes. It is amazing how much the general public is ignorant about. Keep up the good work. Ruth
  15. Nancy, I am glad to hear that you are still doing well. Yes, William is like that. Strange? Sometimes he is totally confused and other times he is reflective. Last night he refused to take his meds. But, this morning, early I gave him his morning meds. Amazing. Your never know from day to day. Hour to hour. Ruth