Caregiving alone

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mrsgeb
mrsgeb Member Posts: 32
edited March 2014 in Caregivers #1
I was wondering if anyone else is caregiving without any help and if you might have advice on how to better manage my time. Hospice comes a couple days a week, but they are only here for about an hour. Our children do no live close by, the closest lives 100 miles away and has a job and two young children and a selfish wife and our daughter lives across the country, 3,000 miles away. My husband has no family left and my sisters are too involved in their non-troubled lives to really care. Isn't it funny how when you can't be the "go to" person and no longer can drop everything to help someone they kind of disapear from your life?

Anyway, I was wondering if anyone had any tips on time management, or how to get a few hours of sleep? My husband can not be left alone at all, can't get out of bed or his wheelchair without assistance, or even go potty without help, so I have had to have my groceries delivered I was so desperate. I have contacted several agenices in my area for assistance, but they want a committment of a certain amount of days a week or a month and a schedule in advance, neither of which I can do.

I apologize for rambling here....I am really tired...my husband has a rough couple of days and is having night terrors.

Thanks for any advice you might have!

Sherry

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  • MichelleP
    MichelleP Member Posts: 254
    #2
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    Sherry
    I was the one and only caretaker for my husband for eight months before we called in hospice. I was completely alone and survived on 3-4 hrs of sleep each day. I used to have to put my husband in the car and take him with me when I went out for food. I would leave him in the car with a "walkie-talkie" so he could call me if needed. I too have (HAD) people in our lives who we always helped and here we were needing help and all they did was go on with their happy carefree lives....so yes....I know exactly how you feel.

    I do want to tell you something about hospice though. You can tell your case manager at "ANYTIME" that you need someone to come sit with your husband so you can run errands etc. You can also ask for a "crisis nurse" who will spend and entire 12 hrs in your home so you can sleep....read a book....take a long hot bath or even leave the home. I never knew about the care they provide until we signed up...but you must ASK.

    Please let me know what happens ok?
  • mrsgeb
    mrsgeb Member Posts: 32
    #3
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    MichelleP said:

    Sherry
    I was the one and only caretaker for my husband for eight months before we called in hospice. I was completely alone and survived on 3-4 hrs of sleep each day. I used to have to put my husband in the car and take him with me when I went out for food. I would leave him in the car with a "walkie-talkie" so he could call me if needed. I too have (HAD) people in our lives who we always helped and here we were needing help and all they did was go on with their happy carefree lives....so yes....I know exactly how you feel.

    I do want to tell you something about hospice though. You can tell your case manager at "ANYTIME" that you need someone to come sit with your husband so you can run errands etc. You can also ask for a "crisis nurse" who will spend and entire 12 hrs in your home so you can sleep....read a book....take a long hot bath or even leave the home. I never knew about the care they provide until we signed up...but you must ASK.

    Please let me know what happens ok?

    Thank You
    Michelle,
    Thank you so much! I called and left a message for my husband’s hospice case manager asking for help! I am not normally a whiner, but I can honestly say that I have never been this tired in my life!
    My husband has been in hospice for 10 months. He was given 3 to 6 months in December 2008. Up until last month he was able to take care of his own personal needs, walk around a little with a cane and he would ride in the car with me to the store (we would talk on cell phones while he waited for me!) If it wasn’t for his appearance (thin thin thin) and his morphine pump, you wouldn’t have known his was as sick as he is. Then literally overnight he decline severly. His hospice doctor said it was like he made up for all those months he maintained.
    I will let you know what his case manager says when she calls me tomorrow. I would be happy just to be able to have 1 hour to wash my hair!
    Sherry
  • MichelleP
    MichelleP Member Posts: 254
    #4
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    mrsgeb said:

    Thank You
    Michelle,
    Thank you so much! I called and left a message for my husband’s hospice case manager asking for help! I am not normally a whiner, but I can honestly say that I have never been this tired in my life!
    My husband has been in hospice for 10 months. He was given 3 to 6 months in December 2008. Up until last month he was able to take care of his own personal needs, walk around a little with a cane and he would ride in the car with me to the store (we would talk on cell phones while he waited for me!) If it wasn’t for his appearance (thin thin thin) and his morphine pump, you wouldn’t have known his was as sick as he is. Then literally overnight he decline severly. His hospice doctor said it was like he made up for all those months he maintained.
    I will let you know what his case manager says when she calls me tomorrow. I would be happy just to be able to have 1 hour to wash my hair!
    Sherry

    Sherry
    Don't wait for them to call you tomorrow....ask that someone call you tonight. If your case manager has gone home for the day, then she's left someone else in charge. They are available 24/7.

    On my husbands last trip home from the hospital (6 times) he was speaking and laughing and eating up a storm...then he declined rapidly. Please call hospice to help you tonight and while your waiting...go hold his hand and tell him how much he's loved.

    Please let me know what happens dear one.
  • mrsgeb
    mrsgeb Member Posts: 32
    #5
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    MichelleP said:

    Sherry
    Don't wait for them to call you tomorrow....ask that someone call you tonight. If your case manager has gone home for the day, then she's left someone else in charge. They are available 24/7.

    On my husbands last trip home from the hospital (6 times) he was speaking and laughing and eating up a storm...then he declined rapidly. Please call hospice to help you tonight and while your waiting...go hold his hand and tell him how much he's loved.

    Please let me know what happens dear one.

    Hospice
    Hi Michelle,
    I called hospice and got a triage nurse…our hospice is through a combination of private insurance and medi-care, and was told that if the crisis was my husband they could send someone tonight, but since the crisis is me, they would pass the message on to the hospice director to contact me in the morning. That will be okay I guess. At least there is hope now that I will get help for a few hours at least tomorrow!
    My husband was in the hospital a couple of weeks ago, his cancer has metastasized to his bones and his femur broke in his right leg. It was actually more exhausting while he was there because I had to stay 24 hours a day to make sure they were giving him enough morphine. The amount he was one at the time was freaking them out! It was explained to me that hospital nurses are not used to treating patients that are terminal and the most morphine they could dispense was 5mg when he was getting 80mg continuously through his pump, he gets 150 mg now so they would really flip! I didn’t really buy the explanation….I think it was more of a power thing…they didn’t know how to manage the pump and I did.
    Thank you again. It feels good just to have someone understand what this is like and that even though we love our spouses so much we still need a little bit of a break now and then.
    I am off to sit with Gary right now….
    Take care of you!
  • mrsgeb
    mrsgeb Member Posts: 32
    #6
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    MichelleP said:

    Sherry
    Don't wait for them to call you tomorrow....ask that someone call you tonight. If your case manager has gone home for the day, then she's left someone else in charge. They are available 24/7.

    On my husbands last trip home from the hospital (6 times) he was speaking and laughing and eating up a storm...then he declined rapidly. Please call hospice to help you tonight and while your waiting...go hold his hand and tell him how much he's loved.

    Please let me know what happens dear one.

    Hospice Help
    Hospice did send someone today, a volunteer. A very nice person, however she was only scheduled for 1 hour. So by the time I got done aquainting her with Gary and what he may need, I only had 1/2 left. At least I got to wash my hair!

    Gary's case manager reiterated that unless the crisis is with him, that I would have to get private care on my own.

    Thanks for the info. At least I now know how to go about getting help when I need it.
  • MichelleP
    MichelleP Member Posts: 254
    #7
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    mrsgeb said:

    Hospice Help
    Hospice did send someone today, a volunteer. A very nice person, however she was only scheduled for 1 hour. So by the time I got done aquainting her with Gary and what he may need, I only had 1/2 left. At least I got to wash my hair!

    Gary's case manager reiterated that unless the crisis is with him, that I would have to get private care on my own.

    Thanks for the info. At least I now know how to go about getting help when I need it.

    I don't understand why the
    I don't understand why the crisis only has to be with him. My hospice group took "me" into consideration as well. If he was resting just fine and "I" was the one who was worn out....they sent a nurse for 12 hr shifts. I would inquire about that if I were you...in fact you can change hospice groups at anytime. You don't have to just stay with one. I remember a neighbor who lives close to me and she desperately needed help and it seemed that most of the time the hospice team was there was spent on paperwork and not her loved one. Please inquire....call different hospice groups if you need to and let me know please. I don't know where you live but I used a company called Visiting Nurses Association.
  • Barbara53
    Barbara53 Member Posts: 652
    #8
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    mrsgeb said:

    Hospice Help
    Hospice did send someone today, a volunteer. A very nice person, however she was only scheduled for 1 hour. So by the time I got done aquainting her with Gary and what he may need, I only had 1/2 left. At least I got to wash my hair!

    Gary's case manager reiterated that unless the crisis is with him, that I would have to get private care on my own.

    Thanks for the info. At least I now know how to go about getting help when I need it.

    get more help
    As usual, Michelle is spot on with her advice. If your hospice agency can't do better than that, fire them and hire a new one. I know that sounds harsh, but it's definitely worth considering.

    Also, is there a way to get your daughter there? As a caregiver/daughter, I feel priviledged every time I get on a plane to go help with mom (it's too far to drive). I leave in a few hours for my 10+ trip since Feb, but knowing how much my help matters, I'm actually eager to go.

    Hope today is better than yesterday.
    B
  • mrsgeb
    mrsgeb Member Posts: 32
    #9
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    MichelleP said:

    I don't understand why the
    I don't understand why the crisis only has to be with him. My hospice group took "me" into consideration as well. If he was resting just fine and "I" was the one who was worn out....they sent a nurse for 12 hr shifts. I would inquire about that if I were you...in fact you can change hospice groups at anytime. You don't have to just stay with one. I remember a neighbor who lives close to me and she desperately needed help and it seemed that most of the time the hospice team was there was spent on paperwork and not her loved one. Please inquire....call different hospice groups if you need to and let me know please. I don't know where you live but I used a company called Visiting Nurses Association.

    Hospice Team
    Hi Michelle,

    I don't know if I can change hospice because it is through our private insurance company and medi-care. The nurses that have been with us since the beginning are wonderful women, but their time is limted. I was told they are short handed and have had to take on extra paitents. I am going to call the hospice director first thing in the morning to voice my concerns to her directly and ask why the crisis has to be with Gary only as Gary's case manager doesn't seem to have the ability to answer questions or provide assistance. I will also check to see if the nursing organization you mentioned operates in Southern California. At this point I will just pay for help for a few hours.

    Thank you for your help. You are a wonderful person!

    Sherry
  • MichelleP
    MichelleP Member Posts: 254
    #10
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    mrsgeb said:

    Hospice Team
    Hi Michelle,

    I don't know if I can change hospice because it is through our private insurance company and medi-care. The nurses that have been with us since the beginning are wonderful women, but their time is limted. I was told they are short handed and have had to take on extra paitents. I am going to call the hospice director first thing in the morning to voice my concerns to her directly and ask why the crisis has to be with Gary only as Gary's case manager doesn't seem to have the ability to answer questions or provide assistance. I will also check to see if the nursing organization you mentioned operates in Southern California. At this point I will just pay for help for a few hours.

    Thank you for your help. You are a wonderful person!

    Sherry

    Sherry
    I'm in southern california too! Here is the link to the hospice company I used.

    http://www.vnasocal.org

    Not only will they provide crisis nurses and aides, they have volunteers who will just come keep your husband company so you can take a few hours for yourself.

    You said you have both private insurance and medicare....so did we! You should be getting the same care we did.

    Good luck and let me know what happens! Nice to know we live in the same state!
  • mrsgeb
    mrsgeb Member Posts: 32
    #11
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    MichelleP said:

    Sherry
    I'm in southern california too! Here is the link to the hospice company I used.

    http://www.vnasocal.org

    Not only will they provide crisis nurses and aides, they have volunteers who will just come keep your husband company so you can take a few hours for yourself.

    You said you have both private insurance and medicare....so did we! You should be getting the same care we did.

    Good luck and let me know what happens! Nice to know we live in the same state!

    Michelle,
    What a small
    Michelle,
    What a small world! I am looking them up and calling right now!
    Thank you so much! I will let you know what happens!
    Sherry

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