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  • marti
    replied
    Originally posted by msgijo View Post
    Marti I am so sorry to read your post and see that things have gotten so bad so quickly. And yes I do appreciate the update - I have been worried about you and Sam since your last post.

    I understand the grieving that you are going thru right now. And I know that no matter what anybody says, you will never "be prepared" for the end. You will still grieve then and it will hurt as much or maybe even more then. BUT you will have had the chance to say goodbye and the sharpest edges removed by then, so I suppose that helps.

    I am glad that they have moved Sam to a Nursing Home for the end. You DO NOT need to be there for that. He would not want you there for that.

    I can say all of this with confidence because I lost my grandmother almost 17 years ago. She had been through a very long decline, and it had worn her and everybody else down (which also wore on her).
    The end was under Hospice at a hospital. The family stayed there with her for the last 3 days around the clock. We would leave the room 2 or 3 at a time, but she always had several people with her. She was so hardheaded that she waited until my uncle and I left the room together to let go. My cousin ran to get us back (we had been out of the room less than 5 mins), but she was gone before we made it back.

    Take heart Marti. Because when we returned to the room although we were filled with sorrow the sight of her was uplifting. Instantly she looked 20 years younger. She no longer had the look of pain and worry on her face. She was at peace for the first time in so many years.
    I am crying as I type this because I loved her so much and I still miss her. But that is me being selfish.

    Sam is being taken care of now in the ways that you can't do. He is aware of the fact that you love him and that you are so tired and wore out. I am sure that he approves of this new arrangement.

    There are things that will need to be taken care of. You can enlist your children's help there (it will ease some of the grief that they are feeling). Doing things now will also help ease your anxiety and may even allow you most of a nights sleep.

    I suggest that you not think too far into the future now. Let a week out be your limit. Try the one day at a time thing. Your life is in flux now and will continue to be for a while. So just concentrate on the things that needs doing and let the rest stay until you feel able to handle it.

    You and Sam are in my thoughts and prayers. Also sending lots of love to you .



    I should have answered this earlier. Sam was only in the nursing home for 5 days. He cried... wanting to come home. We brought him home, with no help in sight. I finally got an excellent caregiver who happens to be my neighbor. Together we watched him thru his last night and were there when he took his last breath. We called in a hospital bed which we only had for one night. The caregiver explained every step of the process and she had the time of death almost to the minute. Takes a special person to do this kind of work. We are having a home memorial this weekend. He will be gone 2 weeks tomorrow. Every phone call, message, card tears open my wounded heart again and again. Thank you again for all your concern and love.

    Leave a comment:


  • Mamabug
    replied
    Originally posted by marti View Post
    So far I've spent all my "respite" time making calls, visits, researching, begging, advertising, etc. Everything but "resting". Five days is not enough. I'm still taking care of all the day to day household matters and the pets, going to see Sam, trying like the devil to please him. He is so unhappy. They are going to order anti depressants for him... finally. I have never been so totally frustrated. There is nothing easy about this process. Hospice does their part, but it's not enough. They try.
    I'm sorry that the time intended for respite is busy with so many tasks instead. And, I continue to encourage you to contact the social worker at Oxford Health Care. I hope you can arrange something (either in-home help, or maybe keeping him in the nursing home after the respite is over) so that his care doesn't continue to fall all on you.

    But I am glad that you are visiting Sam and not following the nursing admin's advice to stay away. I agree with Seasha -- I hope this time together is a loving and compassionate one for you and Sam. I'm also glad that your children have been able to be back and forth. Maybe they can help with some of the many tasks that have fallen in your lap.

    Leave a comment:


  • ladybug162
    replied
    Iím so sorry you are having to go through this. My heart goes out to you. I canít imagine how difficult this must be. You and your family will be in my prayers.

    Leave a comment:


  • Seasha
    replied
    Oh Marti - my goes out to you. I've been following closely and am saddened that he is near the end.

    My mom passed away last Sept. and we had Hospice Care come to her place for bathing, meds and emotional support for my brothers and me. Such loving people committed to helping with this transition. She wanted to stay at home, so we honored her wishes.

    My SIL passed 4 years ago and she spent her final week in a Hospice Home. None of us were equipped to take care of her in her or our home as she was 300 lbs. and couldn't walk anymore. I don't remember how much it cost, but maybe taking him to a Hospice Home might work for you both? Maybe not, considering he wants to be at home.

    Regardless, I hope this time together is a loving and compassionate one for you and Sam. Sending good energy and prayers to both of you and I hope you can work things out so you're not so exhausted. The emotional toil is, in itself, major.

    We are here for you - always

    Leave a comment:


  • marti
    replied
    Originally posted by Mamabug View Post
    A five day respite is likely needed, but it doesn't sound like, at this point, a respite is enough. In the past, you have mentioned a social worker from Oxford Health Care. Perhaps you could talk with her again to get some advice to help you with plans for the future.

    I'm glad you are considering getting outside help. But, perhaps he needs nursing home care? A social worker might be able to help you find options that don't involve Sam returning home, where it is so difficult for you to care for him. Then, perhaps, you could have enough energy (emotional and physical energy) to visit him and spend time with him if you didn't need a respite from caring for him -- if caring for him was no longer your responsibility.

    So far I've spent all my "respite" time making calls, visits, researching, begging, advertising, etc. Everything but "resting". Five days is not enough. I'm still taking care of all the day to day household matters and the pets, going to see Sam, trying like the devil to please him. He is so unhappy. They are going to order anti depressants for him... finally. I have never been so totally frustrated. There is nothing easy about this process. Hospice does their part, but it's not enough. They try.

    Leave a comment:


  • Mamabug
    replied
    Originally posted by marti View Post
    Thanks so much. At this point this is a 5 day Respite Care program. It's more for my benefit than his. There is a debate between the nurses now about just how quickly or slowly he might be done. He can't be fixed... we all know that for sure. I honestly don't know what I will do if he returns home at the end of the week. Looking for outside help right now. Hospice is good, but they are only here on a limited basis. He had 2 falls in one week. So he's pretty sore right now. It's been the only pain he has had thru this. His feet, ankles, legs, knees and thighs are huge and all red and bumpy. His liver is the biggest problem. He's already complaining about wanting to come home. I just need a few more days to recharge. So I might not even go see him. The nursing admin suggested I stay away until it's time to bring him home. It's a heart breaker for sure. Hope your situation is better. I know you were going thru a lot too. Life sucks.
    A five day respite is likely needed, but it doesn't sound like, at this point, a respite is enough. In the past, you have mentioned a social worker from Oxford Health Care. Perhaps you could talk with her again to get some advice to help you with plans for the future.

    I'm glad you are considering getting outside help. But, perhaps he needs nursing home care? A social worker might be able to help you find options that don't involve Sam returning home, where it is so difficult for you to care for him. Then, perhaps, you could have enough energy (emotional and physical energy) to visit him and spend time with him if you didn't need a respite from caring for him -- if caring for him was no longer your responsibility.

    Leave a comment:


  • marti
    replied
    Originally posted by msgijo View Post
    Marti I am so sorry to read your post and see that things have gotten so bad so quickly. And yes I do appreciate the update - I have been worried about you and Sam since your last post.

    I understand the grieving that you are going thru right now. And I know that no matter what anybody says, you will never "be prepared" for the end. You will still grieve then and it will hurt as much or maybe even more then. BUT you will have had the chance to say goodbye and the sharpest edges removed by then, so I suppose that helps.

    I am glad that they have moved Sam to a Nursing Home for the end. You DO NOT need to be there for that. He would not want you there for that.

    I can say all of this with confidence because I lost my grandmother almost 17 years ago. She had been through a very long decline, and it had worn her and everybody else down (which also wore on her).
    The end was under Hospice at a hospital. The family stayed there with her for the last 3 days around the clock. We would leave the room 2 or 3 at a time, but she always had several people with her. She was so hardheaded that she waited until my uncle and I left the room together to let go. My cousin ran to get us back (we had been out of the room less than 5 mins), but she was gone before we made it back.

    Take heart Marti. Because when we returned to the room although we were filled with sorrow the sight of her was uplifting. Instantly she looked 20 years younger. She no longer had the look of pain and worry on her face. She was at peace for the first time in so many years.
    I am crying as I type this because I loved her so much and I still miss her. But that is me being selfish.

    Sam is being taken care of now in the ways that you can't do. He is aware of the fact that you love him and that you are so tired and wore out. I am sure that he approves of this new arrangement.

    There are things that will need to be taken care of. You can enlist your children's help there (it will ease some of the grief that they are feeling). Doing things now will also help ease your anxiety and may even allow you most of a nights sleep.

    I suggest that you not think too far into the future now. Let a week out be your limit. Try the one day at a time thing. Your life is in flux now and will continue to be for a while. So just concentrate on the things that needs doing and let the rest stay until you feel able to handle it.

    You and Sam are in my thoughts and prayers. Also sending lots of love to you .


    Thanks so much. At this point this is a 5 day Respite Care program. It's more for my benefit than his. There is a debate between the nurses now about just how quickly or slowly he might be done. He can't be fixed... we all know that for sure. I honestly don't know what I will do if he returns home at the end of the week. Looking for outside help right now. Hospice is good, but they are only here on a limited basis. He had 2 falls in one week. So he's pretty sore right now. It's been the only pain he has had thru this. His feet, ankles, legs, knees and thighs are huge and all red and bumpy. His liver is the biggest problem. He's already complaining about wanting to come home. I just need a few more days to recharge. So I might not even go see him. The nursing admin suggested I stay away until it's time to bring him home. It's a heart breaker for sure. Hope your situation is better. I know you were going thru a lot too. Life sucks.

    Leave a comment:


  • marti
    replied
    Originally posted by oceanpride View Post
    Hello Marti. Iíve read most all of your posts since I started a long time ago. This is a tough one. I just want to wish you all the best in getting through this chapter. My heart feels for you. Iíve always related to you because of the insomnia stuff. So youíve been special to me.


    Good to hear from you. I'm still an insomniac. Taking Clonazepam every night. With all of Sam's illness I've been extra tired, extra awake. Some nights I feel like I can't take any of my "little friends" because I know I'm going to need to be alert. So far there has been no "respite" to this 5 day Respite Care program. He went in the to home yesterday and today he is already wanting to come home. I finally got to see my doctor today... first time in 2 years of being a caregiver. So, let the resting begin! Not sure how I will handle Sam. Trying to find someone to move in at least during nights so I can get some sleep while someone else listens for his calls. Some nurses don't think the 2 week expiration date is right. So while I was getting used to that, I am now wondering how long this will go on and how I will hold up.

    Hope you are getting some sleep. It really has been a long time since we "met". I've been here since 2002 I think.

    Leave a comment:


  • REG53
    replied
    Marti, I always followed your and Sam posts. I didn't always make a comment but I know what you and Sam have been going thru. I am so sorry Sam is in final stages. You certainly did the right thing. He knows you love him and always did the best you could for him. He will get the care he needs and you can get a little rest. Hospice will be there with Sam, You and Your family.

    I will pray for You and Sam and your family .

    Leave a comment:


  • oceanpride
    replied
    Hello Marti. Iíve read most all of your posts since I started a long time ago. This is a tough one. I just want to wish you all the best in getting through this chapter. My heart feels for you. Iíve always related to you because of the insomnia stuff. So youíve been special to me.

    Leave a comment:


  • DebbieB
    replied
    Marti,
    I'm so sorry - and sad - to hear that Sam is the final stages. Please do not have any second thoughts about sending him to hospice. When my father passed, I can honestly say that the hospice services provided to him was loving and caring, for both him and the family. It was kind of like angels assisting through the process.

    I am so sorry for what you are going through and will keep you, Sam and your family in my prayers.

    Debbie

    Leave a comment:


  • msgijo
    replied
    Marti I am so sorry to read your post and see that things have gotten so bad so quickly. And yes I do appreciate the update - I have been worried about you and Sam since your last post.

    I understand the grieving that you are going thru right now. And I know that no matter what anybody says, you will never "be prepared" for the end. You will still grieve then and it will hurt as much or maybe even more then. BUT you will have had the chance to say goodbye and the sharpest edges removed by then, so I suppose that helps.

    I am glad that they have moved Sam to a Nursing Home for the end. You DO NOT need to be there for that. He would not want you there for that.

    I can say all of this with confidence because I lost my grandmother almost 17 years ago. She had been through a very long decline, and it had worn her and everybody else down (which also wore on her).
    The end was under Hospice at a hospital. The family stayed there with her for the last 3 days around the clock. We would leave the room 2 or 3 at a time, but she always had several people with her. She was so hardheaded that she waited until my uncle and I left the room together to let go. My cousin ran to get us back (we had been out of the room less than 5 mins), but she was gone before we made it back.

    Take heart Marti. Because when we returned to the room although we were filled with sorrow the sight of her was uplifting. Instantly she looked 20 years younger. She no longer had the look of pain and worry on her face. She was at peace for the first time in so many years.
    I am crying as I type this because I loved her so much and I still miss her. But that is me being selfish.

    Sam is being taken care of now in the ways that you can't do. He is aware of the fact that you love him and that you are so tired and wore out. I am sure that he approves of this new arrangement.

    There are things that will need to be taken care of. You can enlist your children's help there (it will ease some of the grief that they are feeling). Doing things now will also help ease your anxiety and may even allow you most of a nights sleep.

    I suggest that you not think too far into the future now. Let a week out be your limit. Try the one day at a time thing. Your life is in flux now and will continue to be for a while. So just concentrate on the things that needs doing and let the rest stay until you feel able to handle it.

    You and Sam are in my thoughts and prayers. Also sending lots of love to you .

    Leave a comment:


  • pennstater
    replied
    Marti,

    Hospice care can be a positive experience, providing the medical and emotional support for both the dying and surviving members. Take advantage of any service they offer to help with grieving.

    I am so sorry for the heartache you are feeling. You did all you could do for Sam and I am sure he knows that. I pray you both find peace.

    Leave a comment:


  • marti
    started a topic Sam again

    Sam again

    This is almost over. Sam has Hospice care... 2 weeks now and was transferred to a Nursing Home today for Respite Care. I realize this is more for my benefit than his, but I feel better knowing he is getting proper care... something I could not give him at home.

    His nurse told me she did not think he would like 2 more weeks. Liver is failing, heart failure with AFIB.

    I know this is not a MS post but some of you have been following my journey and I thought I should give you this update. This has been the hardest thing I have ever done. Calling Hospice is pretty final and I keep questioning myself. But they all tell me I did the right thing. I've had him home with me and have become so worn down trying to take care of him. I've forgotten to give meds, messed up just about everything at one time or another. He fell twice last week which really advanced the situation.

    I've been crying for several days and am so weary and exhausted. The kids have been back and forth and now they are grieving.

    Sorry to post this here. I know you all understand. Maybe someday I will be able to help someone else in this position.
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