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Trying to keep a disable spouse at home is a nightmare.

Wednesday, March 20, 2013

The System is not designed at all to help us keep our disabled loved ones at home.

After 7 years I am now somewhat knowledgeable but still very frustrated trying to accomplish this.

And my husband's needs have changed so the fun starts all over again.

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    You are sooooo right about the system and I don't trust the system to care for loved ones the way we do because they don't love them the way we do.
    1855 days ago
    So very sorry for all you have had to go through and continue to do so. Keeping you in prayer!
    1855 days ago
    Blessing to you Chris.
    1856 days ago
    Chris: My heart goes out to you. I can understand not only your frustration but I'm sure you're anxiety levels are high with trying to do your best & not knowing where to turn emoticon Sandi
    1856 days ago
    May the Lord bless you Chris & the favor of God upon you and your husband . I have great respect & admire you . you will surely be rewarded . This is no easy task .

    i was wondering . ever consider a care giver to be a live in ??? for room & board
    now days that is scary also . But they are wonderful people . who could help.
    may the Lord richly reward you
    and for sure take your me days !!!!
    keep well & strong & walk in Health your self
    1857 days ago
  • 123ELAINE456

    I'm Sorry to hear all the problems You have in caring for Your Husband.You Are Doing Fantastic Job with Him. I know it is extremely hard on You with the Full Care of Him too. You need to take time out for Yourself to do what Chris wants to do too. That would help You a lot in being able to cope with all of it. You are a Great Inspiration to many People doing this for Your Husband. Keep It Up and Never Give Up. Glad That You Have the Help with the Doctors, PT and Home Aides With Him. God will Bless You for This. God Blessings to You and Everyone. Have a Lovely Day. Take Care. Hugs!!!!!!!!!!!!!!!!!!!!

    1857 days ago
  • DANLIN60
    Chris,I am so sorry that you are going through this, my prayers are with you. One of my fears is that one day I will be a disabled spouse to my loved one.

    God Bless you for all you do and your strength


    1857 days ago
    Chris prayers for strength.Please do take sometime for yourself once a week . emoticon
    1857 days ago
    Prayers and thoughts continue to go with you during your monumental task of being a loving and caring spouse.
    1857 days ago
  • DEBBY4576
    Bless you for doing all you can for your beloved husband. I am doing a similar thing for my 91 year old Mom. She has lived here 10 years. I see things deterioting. You certainly can't work. My Goodness the doctor visits are one thing or another 2Xs a week. But I bet your husband, if able to tell you, would say the same thing my mom said to me, that I hold to my heart now as things get harder. She said "God is going to bless you for how you've treated me." Hang in there as you have so strongly been able to do.
    1857 days ago
  • BETHS60
    I am sorry that things are so tough for you.
    1857 days ago
    He's 'lucky' (not lucky, but lucky) he has you to help him and take care of him. Many others are not lucky enough to have people willing and able to care for them when they can no longer care for themselves.
    1857 days ago
    Chris - I pray strength for you. My Mom is having a hard time with my stepfather right now as he has Alzheimer's, becoming withdrawn and loosing control of some bodily functions. Please take some time, some where, some day for yourself! Even if it is just a long bubble bath. You'll feel better. Praying for you.

    1857 days ago
  • FRAN0426
    So sorry you are going through the process that isn't easy to get through all the red tape just to get the proper help for a loved one. Hang in there and keep fighting for what you DH needs. I am so in awe of those who take this on to keep their loved one at home, to many just don't want anything to do with loved ones with needs.
    1857 days ago
  • MISSG180
    Chris, that's so tough. I'm sorry you're going through this.
    1857 days ago
    Chris, I know this is a terribly trying situation for you. It may sound trite, but I don't mean it that way: God won't give us anything that we can't handle WITH HIS HELP! He will equip you to do what He wants you to do. I'm praying for you and your husband.
    1857 days ago
    Chris, I totally agree with you. My grandma had Alzheimer's and my aunt and my mom had a heck of a time trying to take care of her at home. I hope you have better luck with the new needs.
    1857 days ago
    Taking care of a loved one at home is a full time job and I am so proud of you for making the effort. I had to use Home Health Care with my parents. As time went on this became Hospice with my father. Once my dad passed, my mom's light just went out. I eventually had to place her in an Alzhemimers ward. I applaud you for being able to care for your husband at home. I encourage you to seek some help so that you are able to have some "me" time as weel. Hang in there. My prayers are with you.
    1857 days ago
  • RAMONA1954
    Don't ever give up! You're doing a fantastic job especially with all the obstacles you've been facing. Keeping you in my prayers as always. emoticon
    1857 days ago
    Chris you are in my prayers as is your husband. My husband has had to take care of me in the past and he is a jewel and so hope I can do as good a job has him if he has a turn. Getting old isn't for sissies!!! emoticon
    1857 days ago
    Hang in there. emoticon emoticon emoticon
    1857 days ago
  • NEWLISA2013
    My dad suffered from MS. I am not sure what your husbands disability is, but I will try to read your profile to see what I can find out :) Dad was diagnosed in 87. He went from normal every day life to walking on a walker, then a wheelchair all within a few short years. Within 5 years he was bedridden, slowly he lost the use of all of his limbs. He could only lie in bed and watch tv. My mother, was his caretaker. She took care of him til he passed in June of 2012. It is very disheartening. She lived to care for him. Being on the outside, you never know what anothers life is like. Even though he was my dad, I live in Alabama and they live in WV. I didn't see them but a couple times a year. Dad had a stroke in May of 2012, 2 days after I flew back to Alabama after a visit...so I went back and stayed at the hospital for a week. Had to get back home to work...but the whole time I was there he was on a breathing tube. They took it out and he got worse...So I went back again 4 days later and he started to improve. It was such a roller coaster. I stayed at the hospital every night so mom could go get some real sleep at home. I tell ya, I have a new found respect for her after that. He would call her name every 20 mins or so during the night...always needing something. Of course I would tell him it was me there, not her and get up and do whatever he needed. I asked her if he always did that...and she said yeah. I cant imagine what it would be like to go through that every day. She fed him, she bathed him, she cleaned his 'functions'...I wish she would have had help. I just never realized it all...and I dont think anyone does until they actually live it. Dad passed a little over a month after his stroke. I am sorry to lay all this out here, but when I ran across your blog it kind of hit home...and I thought, she is absolutely right.

    *Bless you* for all you do. You are obviously an amazing woman with a big heart, and even though I do not know you, or your husband I do know he is def lucky to have you to watch over and care for him :)
    1857 days ago

    Comment edited on: 3/20/2013 2:20:46 PM
    Chris, you are an inspiration and comfort to me. I'm glad you are able to care for your spouse within an environment that is share by you and controlled/safe.
    I have health issues that are more disabling at times and one of my fears are going to the hospital or longer term care facility. If you ever can share your experience sometime, I think it could help others.
    I don't expect you to do that anytime soon, sounds like you are busy and keeping your priorities focused properly.
    I appreciate your blog.
    1857 days ago
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