Yes, help has finally come to me for my husband, Mike. After a recent visit to Mike’s primary care physician, and, telling him that I feel Mike was in desperate need of therapy, the doctor told me that there was help available to us. He then told me that he was going to notify the home health care company associated with his practice. Mike would be receiving physical, speech, occupational, and cognitive therapy and would be getting a new walker after having two falls with the old one that keeps getting caught on things as he walks over them. We are also suppose to be getting help from a social worker as well to start planning for the future. A nurse also comes in now to take care of Mike’s pressure sores that he has developed on his bottom.

I can’t even begin to tell everyone how it feels to have some of the weight lifted off my shoulders. I am hoping for the social worker to provide some help as far as temporary relief for me, as, I still have no one to help me in that department.

I get more support from friends and people who don’t even know me than anyone that should care.

As like many of you caregivers out there, I am doing this all by myself. No help from anyone.    I am sure that is nothing new for any of you out there to hear. I get more support from friends and people who don’t even know me than anyone that should care. Family? They are always too busy, not around; live to far away; don’t have the time; or “Gee, wish we lived closer so we could help”. Yes, I know that feeling. I have heard it all.

I have gotten to the point where I would rather do it myself anyway; then, I know it’s been done right; and, if something goes wrong, well there is no one to blame but yourself.

I have also encountered  the ever annoying answer when you try to tell the persons that are trying to help, “you don’t need to tell me, I know what to do with him”. I love that one especially when they don’t know a thing about what goes on with the patient at all. They don’t’ spend everyday with him; know his habits; his schedule; the certain way things need to be done with the patient.

Am I angry about a lot of these things? You bet. Because no one takes the time to educate themselves about the problem; talk to you, the “one”, who has been through it all with the patient.

Anyway, I just wanted to share this with all of you out there. I know at times it seems like there is no light at the end of the tunnel, but, there is. I have been dealing with this on my own now for over 7 years, and, have had so many breakdowns and feelings of dread of no hope at all for this life which no one has asked for; crying myself to sleep at night; yelling at my husband when I even know that none of this is his fault; losing my patience; all these things that we, the caregivers, experience everyday. But, someday, I hope the dream and hope for help will come for all of you out there who are doing your best everyday to take care of your patient; loved one; siblings; children.

Please keep searching for the help; the answers to your questions. Someday, someone will provide the start for you like Mike’s doctor did for me.

I know my challenge and duties are not over yet, far from it, but, at least the “ball” is rolling, and that’s the start to a good thing, and, hopefully will someday be the same for you! God Bless You All!

Written by Kathleen

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31 Comments

  1. At my age I have decided to pick my own “family” as it seems the one I have just wants the material things left by others but not the burdens of the care required while they are alive.

    Thanks Constance Berg for always being an inspiration to this site.❤️

    Reply
  2. Yes,sad that friends ask and comfort you more children just think u doing what u supposed to be doing.

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  3. i think this happens to us all at some point. they don’t want to offer any help or brighten someone’s day. you can’t chose your family! PITY

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  4. Sadly …so true ..so many giving loving people in the world but typically not your supposably family

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  5. As a nurse, I see this all the time, it’s sad really.

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    • Agreed, Jo! You and I have both had personal and professional experiences with this to a degree.

      Reply
  6. My parents both died this spring, 6 weeks apart. I had friends from FB who I’ve known for years but never met, drive hours to be at the service. Friends here, not so much. POOF, disappeared.

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    • I got the “nobody quits their full-time nursing job and moves back to their parents home to take of sick parents,” from people I knew and strangers. It was a very isolating experience. I lost friends and family support during that time and never regained it.

      Reply
  7. Sadly, sometimes it is easier for non-family members and health staff to help and give support then family members. I have family members that lack all capacity for compassion and empathy.

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  8. wish I could get the same for my sick parents… especially with my father now…

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  9. I left my family to follow my bf, he’s off the truck due to medical there’s a lot he REALLY doesn’t get

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  10. True for us, just me and my 3 amazing Children against an awful connective tissue disorder and it’s many related conditions….no love or support from blood relatives, they faded to black many years ago…we could not have made it without the love, kindness, compassion and generosity of dear heart friends and some who have never even met us…it is in my nature to want to do it all as they are my blessings and my responsibility…but thankful every day for the angels in our lives. I say it is between God, the Universe and those relatives who conveniently disappeared…and we move onward with gratitude and love. Thank you for this site, many powerful heart messages to help us all through. <3

    Reply
    • Wow….thanks for sharing that!!! It’s myself and my three girls that carry the weight of my daughter’s disease(kidney disease and other disabilities) on our shoulders…..family faded a long time ago!!!! I always try to do everything on my own since I’ve become accustomed to doing it that way!!! We receive way more support from strangers and other caregivers…God Bless you and your family too

      Reply
  11. My husband has Parkinson’s and is still doing pretty well, but the future scares me.

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  12. I hope your help is more reliable than what we have experienced through social services. Glad to see that at least there is improvement in your situation.

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  13. Thanks to all of you with the thoughtful comments. I also just found out that Mike can also go to an intense rehabilitation facility near us here in Florida for 1 to 2 weeks of intense physical; speech; occupational and cognitive therapies. It is a place where he would have to stay for that period of time, which we feel and the physical therapist who is working with him now and social worker feels as well, that this would be great for the both of us. It would give Mike the help he needs so desperately and give me a break. We are hoping or the best here!

    Reply
  14. Katherine,
    I am so happy for you & the both of you. Can’t imagine how wonderful.that small sigh of relief you are feeling right now. You have given us all hope to keep pushing on..and to keep asking, despite hitting so many walls.
    Happy for you & thanks for the encouragement !

    Hugs, Lauren

    Reply
  15. It’s a wonderful feeling knowing there is SOME kind of help out there. I have walked many miles in your shoes and know how it is being all alone. Glad to hear something is happening, good luck.

    Reply

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